Type One & Hypothyroidism

[Becca]

Hey there,

I'm wondering whether there are any other type ones out there with hypothyroidism? I've been attending a pre-pregnancy clinic and my thyroid numbers were Ok-ish initially, but then went lower. I'd been feeling a bit washed out, but generally coping, last year and had put it down to stress in my job and relationship. In the winter months I had a few bouts of humungous (short) depression, but had tackled it by going to the gym. Then in July the lovely consultant at my clinic decided to put me on levothyroxine and by god! it's great! I haven't done my next round of bloods to see whether the tablets have made any difference but I feel they have. All I can find online is people who have had terrible times on it, but I found my mental clarity and energy levels improved massively in a very quick time and am feeling generally really good: no blue moods. My blood sugars are mostly as they have been, and I seem to need less insulin, though that might be the increased activity levels rather than any change in insulin sensitivity.

However, I have noticed that a difference of a few hours in taking the tablet can have significant effects however (i.e. if I take it too close to coming to work I'm a bit woolly for a while) & I don't know whether my dosage will change. Any feedback /tips from fellow type 1-ers who have taken levothyroxine or other generic thyroid medication would be appreciated!

 

[shop]

Hi Becca,

I am on levothyroxine. I was originaly hyperthyroid them went hypothyroid after radio iodine treatment. I have been on it for about 9 years. Only T1 for the past 6 years. My dose has been adjusted over the years but I have been on the same dose for the past 4 years. I had to have my dose increased while I was pregnant and then reduced after I had given birth. Then adjusted again a few years later. I have my thyroid function checked by the diabetes Consultant ant the hosp every 6 mnths and by my GP every 12mnths. I know a few people on thyroxine ( not diabetic ) and everyone is different, different doses, some have been static dose throughout others have had to have it adjusted. You are right in saying that you should try to take it at the same time everyday. It is early days so I can understand the odd fuzzy time however your GP should be checking you regularly at this stage to ensure that you are on the correct dose.

Hope this helps

Lucy xxx

 

[CarbsRok]

However, I have noticed that a difference of a few hours in taking the tablet can have significant effects however (i.e. if I take it too close to coming to work I'm a bit woolly for a while) & I don't know whether my dosage will change. Any feedback /tips from fellow type 1-ers who have taken levothyroxine or other generic thyroid medication would be appreciated!
Becca

Hi Becca,
underactive thyroid quite often goes hand in hand with type 1 diabetes, so welcome to the club.
It takes weeks for the dosage to get into your system, hence why it's left 6 weeks from first dose for the next blood test.
There should be regular checks for the first 6 mths to make sure you are on the right dose, then either 6 monthly or yearly, with a check if feeling under the weather.
Dosage can vary as well either up or down.

 

[l0vaduck]

I'm T1 on levothyroxine. I take it in the morning before breakfast. I was told that a common mistake is not taking it on an empty stomach, or not waiting half an hour before eating after taking it, so I always try and do that, even though I don't always take it at the same time (no way I'm setting my alarm for 5.45 at the weekend, for example!). To be honest I find it difficult to know what is tiredness due to the thyroid deficiency and what's just my normal state these days!

At my last appointment my consultant said that although my levels were within normal tolerance, they were at the top end of the range, and recommended increasing the dose from 75g to 100g, but since then I haven't felt the benefit so I'm not sure that was such a good move.

When I first started on the medication my background insulin needs went down.

 

[hails]

Yes me too Type 1 and the same tablets

I am quite an upbeat person and upon diagnosis I felt so down it was unbelievable and they reckoned it was all to do with the thyroid. It was the worst I have ever felt and after the tablets kicked in it was like the whole world changed for the better!

I take it before my dinner in the eves and occassionally miss one but have noticed no side affects

 

[Becca]

Hi there --

Thanks for the replies! It's good to hear about other people in the same boat. I knew about the association between type 1 & hypothyroidism given the joys of auto-immune problems! So I had mentioned it to my Dr, who was keeping an eye on it. My numbers are not drastic, and frankly I'm borderline 'sub-clinical' hypothyroid. I'm wondering whether this was affecting me before the diabetes, actually, as I was diagnosed with Raynaud's a couple of years ago. Some of the symptoms are quite close to hypothyroid, and I'm noticing my cold sensitivity seems somewhat improved.

@lovaduck - I'm with you in not getting up at 5.45am to take the tablet, or indeed anything! I;m only human after 9am at the best of times anyway! :yawn: Like you I think I need less insulin: bit of a hypo (2.9!) yesterday after only 5 unites for a carby lunch.

@hails - do you find taking the tablet in the evening works better for you? There seems to be evidence the absorption is better and it is less likely to affect sleep, but currently I'm taking my dose in the morning.

Great to have the support of this forum! Honestly, I don't know what I'd do otherwise!

 

[l0vaduck]

Something I realised yesterday, which I think might have been the reason for my recent lack of energy - I read some of the fine print about levothyroxine where it says you shouldn't take iron or calcium supplements at the same time of day or they prevent absorption. Guess who takes calcium and multivitamins every morning!

I'm now trying to remember to take the supplements in the evening and I do feel a bit better today!

 

[Becca]

Whoops! I've run out of mine, but when I go back on I'll remember this!

 

[WKD]

Hi I also have type and take thyroxine, but I was diagnosed with an under active thyroid via a blood test the blood test also diagnosed ceoliac a few years later I was diagnosed type 1 which was very strange for my age as my consultant said, he said it was auto immune disease. so you need to look after your self as you are more prone to ceoliac disease. Ive been on the same level of thyroxine for years now but dont feel like no spring chicken, all 3 have been tired symptoms and after surviving NF I feel more tired than ever
,so please keep all your injection and finger jabbing sites clean and only use all needles one including your lancets, just to be on the safe side.

 

[Becca]

Hi WKD,

Sorry to hear about the Coeliac, and NF: and am especially sorry to hear about the tiredness. I know all these conditions cluster under auto-immune problems, but am hoping they don't necessarily all come together (Fingers crossed). Can you explain why keeping sites clean / only using needles once helps? I'm generally good about this, but there have been a few occasions when I've been travelling and have run low on needles and ended up re-using. Not ideal, I know, but better than having super-high BS readings (or not eating carbs).

 

[anna29]

Hi All.
With my thyroxine therapy I take it mornings 8am then it boosts my low energy levels...
I take my statin (Atorvastatin) and vitaminD forte at night to ensure more than 4hours timespan to
prevent interference/sabotage to my thyroxine therapy.
Both my GP/pharmacy instructed me to do this - this way.
It is important to give the thyroxine its fullest effect(s) for maximum performance or else little
change can happen. (dr's words!)
Have been hypothyroid since the birth of my only child 27years ago - apparantly after pregnancy it affected
my thyroid! Hormones change etc... it is an autoimmune condition.
YES there 'is' a link to diabetes with hypothyroidism my DSN/Consultant confirmed this when I raised this question
to them both.
Hope this helps.
Anna.

 

[katebrady]

Hi been a bit lax lately looking at the site. Anyway just to say that I am a type 1 diabetic (pump user), diagnosed 1983, under active thyroid finally diagnosed 2001 (wanted to kill myself thought I was having severe mental health issues crying screaming massice weight gain etc). they have finally agreed that I am insulin resistant (most days up to 250 units of insulin and not a lot happening blood glucose wise) so have to take metformin twice daily, I have scleroderma and Sjogren's Syndrome - all auto immune.
Diabetes type 1 had sugar in my urine and losing weight last month of my second pregnancy but no action taken as the sugar wasn't getting through to the baby. 16 months later and after nearly strangling my daughter I was told you are emotional Katie. I explained that I wasn't emotional but that I woing to get emotional if he didn't find out what was wrong with me. A simple urine dip stick test gave him his answer. When I wnadered down to the A & E department of the hospital they panicked as my blood sugar was 44. Basically I told them that I had been like this for months and nothing followed up after my daughter's birth so don't start nagging now as no-one had believed me. So type 1 diabetic
.
I always had high blood sugars but was told it's just you Kate Brady. years later when blood sugars were 26 in the morning then taking about 40 units insulin but still 26 + at lunchtime. I cut down on carbs etc. Professor at the diabetic clinic laughingly told me that I was a menopausal depressive. I basically told him that I was not menopausal and certainly not depressed. Then a few days later saw an article on underactive thyroid - wondered if that could be what was wrong; remembered that a surgeon told me after I had a major sinus operation to have thyroid checks as any op, injury above the neck can trigger thyroid issues (had a major car crash in 2000 bounced of the M1 down a 40 foot embankment and walked away with a broken thumb; the car had tried to turn over several times as I was bounced around, trees stopped the car going over). Anyway demanded a thyroid test after reminding medics that thyroid and diabetes can go together and yes after 18 months of hell was diagnosed under active. I am on Armour Thyroid as it gives you all the Ts. Specialist that I paid for myself advised taking meds AM and PM to balance out the good they can do.
Sjogren's causes dry eyes etc, I have diabetic retinopathy, recent cataract op and wiating for the other one to be done.
However, don't lose heart it does all balance out and it can take quite some time to do this. I am now 62, diagnosed at 33, still work full time as a child protection social worker (stress - don't have stress in your life as it affects your diabetes haha but I need to eat). I do my utmost to lead a normal life, hate the pump as it is a very visible reminder of my diabetes but it has helped, eyes are not brilliant but I'm currently still allowed to drive. So all in all I don't think I'm doing too badly, still enjoy life and will do as long as I can can. Oh one small point my Thyroid specialist advised me to take a good quality Vitamin B supplement as these vits can go haywire because of the thyroid. Good luck with it, it's trial and error and we're all different, my blood counts are always at the higher end of the scale but my doc has finally agreed that's normal for me. Take care of yourself

 

[hails]

Thanks for the replies! It's good to hear about other people in the same boat. I knew about the association between type 1 & @hails - do you find taking the tablet in the evening works better for you? There seems to be evidence the absorption is better and it is less likely to affect sleep, but currently I'm taking my dose in the morning.

Hi Becca

I was medicated when I got to 9.5 or something, although the UK tends to medicate at 10? The US medicate when you are over 5.5. Sorry if those figures are slightly out but you can see the problem! At my level I felt so awful and had to pretty much beg for the medication as I felt so down in the dumps it was unbelievable!

I have had steady thyroid levels since 3.4ish usually and I have always taken it with my evening meal. I sleep like a log every night so it hasnt affected anything there. I havnt ever done it at a different time to compare but I always consider taking tablets with your biggest meal of the day the best idea

H x