TSH Finally Out of Range - Advice Please

[Fluffysheep]

I've got Hashimoto's (thyroglobulin antibodies 230 in a range of 0-130), and have been medicated for coming up around 11 months following my diagnosis last year. Started on 25mg of thyroxine, now on 150mg. I have blood tests every 8 weeks, and these are my most recent ones from this week. Things are not any better, I still feel awful, same old symptoms as I put in every post - tiredness, brain fog and poor memory, sore muscles, hair loss, weight gain, plus loads of others. There hasn't been any improvement at all.

I did have a test for coeliac which was negative. I know that going gluten free can help but I haven't yet, because I wanted to get to a stable level on meds so that I would then know if it was actually the meds or the gluten free that was helping.

Also (because I know people will ask), my vitamins etc weren't checked this time, it was literally just TSH, T4 and T3. Last time they were checked in Feb everything looked good and levels had come up a good deal from the previous time they were checked. I am supplementing using Vitamin D + K2 spray, Vitamin B (ingennus), magnesium and selenium.

Last time I saw my Dr in Feb she upped my from 100mg of levo to 150mg. Not normally recommended on here I know. I don't seem to have suffered any ill effects from going up 50 instead of 25, but just no improvement.

And again, because I know it will be asked, yes it was a fasting blood test done first thing with my last dose of levo the previous morning.

Anyway, here are my results:

TSH 0.03 (range of 0.2 - 4.2)

T4 18.3 (range of 12 - 22) 63% through range

T3 5.1 (range of 3.1 - 6.8) 54% through range

I am almost certain my Dr will not increase my thyroxine. Every time I see her she says she is happy to increase meds as long as everything stays in range. She doesn't care where in the range, but within it. Obviously my TSH isn't within range any more. On here we know that doesn't mean too much, but I'm pretty certain that she won't move from her standpoint. That potentially means she will look to cut my thyroxine to 125mg, as last time we did the big jump from 100 to 150.

Where does that leave me?

I asked for advice last time, and will ask the same thing again. I do have T3 medication that I bought over the counter in Athens late last year in case I needed them. I have NOT taken any yet. They are 25mg tablets, and I have 14 packs, so enough to last a fair while, particularly as I know the advice on here is to start slowly.

Do I start the T3 meds? Do I do something else? I'm really at a loss, but I know that it's been almost a year since I first discovered a problem and it's really getting me down.

Thanks in advance for any advice. I've tried to cover what I think I might be asked in what I've put above, but if I've missed anything out I'm happy to clarify.

[SlowDragon Administrator]

First step, before considering adding T3 is probably to try strictly gluten free diet

We need “all our ducks in a row” first

Your results suggest you are actually quite a good converter

Which brand of levothyroxine are you currently taking?

What are your primary ongoing symptoms?

The other thing to consider is doing Dio2 gene test

If you test positive that’s good evidence of need for T3

When starting T3 ...recommended to start very very slowly. 1/4 tablet (Or even 1/8th tablet) in morning.....see how that goes. After few days add 2nd dose mid afternoon.

Hold at 1/4 tablet twice daily for minimum of 6-8 weeks before retesting

[Fluffysheep in reply to SlowDragon]

I'm taking actavis for the 100mg tablet and Teva for the 50mg tablet. The brands haven't been consistent since I started medication, I've just taken whatever I've been given.

What is the gene test and how do I go about getting one? What exactly would it tell me?

The gluten free thing - I have been a little reluctant mainly for the reason I gave above that I wanted to get stable on medication. Also, I did think it would be a little tricky as I'm a vegetarian plus we had lots of holidays booked (not that that's currently an issue with COVID 19!). I've been low carbing, although that has basically stopped working for me, so have stopped doing it. Can't get any online shopping slots, so would have to go to the supermarket to get stocked up with gluten free stuff (not necessarily the ready made stuff, but the every day things like sauces and stock cubes that have hidden gluten in them). I suppose in this current climate I'm a bit worried about what I can get. I do realise that a lot of that sounds like excuses.

My primary on-going symptoms are the ones I listed above. Fatigue, brain fog and poor memory, weight gain, hair loss and muscle and joint pain (getting worse as I put more weight on but I just can't lose it). I've also had problems with my periods, an ablation sorted out the heaviness problem but they're getting a bit erratic (last one was 10 days early). I was tested for the menopause but that was negative. The tiredness is ridiculous, I basically don't get out of bed before 10am and even that's hard work. No matter how well I've slept (and to be fair I don't think my sleep quality is great) I wake up exhausted. I just have no energy at all.

[SlowDragon Administrator in reply to Fluffysheep]

As a vegetarian with Hashimoto’s it’s really extremely difficult to maintain iron levels

Heavy periods are classic hypothyroid symptom and obviously frequently lead to extremely low iron and ferritin levels too

When were iron and ferritin last tested?

You need full iron panel test for anaemia

Don’t supplement iron without testing first

All plant based iron is non heme and much harder to absorb

healthline.com/nutrition/in...

hsph.harvard.edu/nutritions...

Eating iron rich foods like pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

The only way to know if you personally have an issue with gluten is to try strictly gluten free diet

Obviously a challenge to get use to initially and especially with current shopping difficulties at the moment.

See what iron levels are like first

If your GP isn’t aware that you are vegetarian you need to tell them

Nether Levo or T3 will work well until all four vitamins are optimal

Vitamin D, folate B12 and ferritin

[Fluffysheep in reply to SlowDragon]

In Feb 2020 3 out of the 4 of these were tested and were all good (I think!).

Vitamin D was 98.5 nmol/L (no range, but it says over 50 is considered adequate)

B12 was 657 ng/L (range of 180 - 914)

Folate was 11.1 ng/mL (range of 3 - 20)

Last time ferritin was checked was July 2019, and it was 50ng/mL (range of 11 - 307), so in range but not great. I also had iron and iron binding done at the same time. They were all in range, but I don't know the importance of them or where they should be in the range, so will list results in case it helps.

Serum iron level 22umol/l (range of 11-25)

Serum unsaturated iron binding capacity 29umol/l (range of 20-62)

Serum TIBC 51 umol/l (range of 44-71)

I never take any of my supplements with my thyroxine, tend to take them afternoon or evening, and I'm not on any other medication.

My periods are not heavy at all since I had the ablation, which is a godsend as they were horrendous before. However, they drag on and on (last one went on for around 11 days, and that was after coming on 10 days early).

If I were going to try the gluten free thing, which I am now seriously considering as long as I can get enough stuff to keep us going when shopping, how long is considered long enough to have given it a proper go (just thinking if I don't see any improvement I don't want to give up too early).

[SlowDragon Administrator in reply to Fluffysheep]

6 months really for serious trial. Can take longer for brain fog to lift

Ideally testing TPO antibodies at end (if thinking of going back on gluten)

Many people see slow steady drop in TPO antibodies when gluten free

[Fluffysheep in reply to SlowDragon]

My TPO antibodies were well in range when I did my antibodies test with medichecks, it was the other ones that were double the highest figure in the range. Is it still worth checking them after a trial of gluten free?

[SlowDragon Administrator in reply to Fluffysheep]

Good question....don’t know is the answer

[knitwitty in reply to Fluffysheep]

Hi Fluffysheep

I had thyroglobulin antibodies in the 400's and I went Gluten free , my antibodies took ages to come down ( about a year after going GF ) but they are now around 30-40 ( well within range).

I never touch gluten now and generally feel much better for it, but as with most things thyroid related going gluten free is not a quick fix, I think the damage caused by eating gluten ( if it does not suit you ) can take a long time to heal.

My son was diagnosed coeliac a few years back, after being ill for a number of years, when he went gluten free he thought it would be almost an instant fix but it took almost two years for his gut to heal and for him to feel well again.

If you do commit to going GF it has to be completely GF there's no room for cheating!

Good luck.

[Fluffysheep in reply to knitwitty]

Thank you knitwitty. Don't worry, I absolutely will commit to it, will be doing lots of research first. Hopefully there is some useful resources out there to help me with checking suitable items rather than having to start from scratch and read the label of every single thing in the supermarket! It will be a learning curve, but then I'm used to checking ingredients as I'm vegetarian, so I guess it will just be a (big) step up from that!

[knitwitty in reply to Fluffysheep]

Hi again fluffy sheep, if you join coeliac uk ( I think it's about £30 for an annual membership) you can download an app on your smartphone which enables you to scan the barcode on foods at the different supermarkets. This does not cover every single item that is for sale but it is pretty comprehensive, I use it when I am buying things I do not usually purchase, you also get a directory where you can look up common food products.

You do not have to be coeliac to join, and they have a great website with recipes and other gluten free information, I think you can sign up for that without joining too.

Have a look it might be useful for you.

[Fluffysheep in reply to knitwitty]

Awesome, thanks so much

[knitwitty in reply to Fluffysheep]

You're very welcome!

[SlowDragon Administrator in reply to Fluffysheep]

SeasideSusie might comment on ferritin and iron results

Not something I know much about (my ferritin always sky high (opposite issue)

[SeasideSusie Remembering in reply to Fluffysheep]

Fluffysheep

Last time ferritin was checked was July 2019, and it was 50ng/mL (range of 11 - 307), so in range but not great. I also had iron and iron binding done at the same time. They were all in range, but I don't know the importance of them or where they should be in the range, so will list results in case it helps.

Serum iron level 22umol/l (range of 11-25)

Serum unsaturated iron binding capacity 29umol/l (range of 20-62)

Serum TIBC 51 umol/l (range of 44-71)

I wouldn't put too much store by these results as things change, but I can give you the optimal levels according to web.archive.org/web/2018083...

Serum iron: 55 to 70% of the range, higher end for men - yours is 78.57% so supplementing iron would send it even higher which wouldn't be a good idea.

Saturation: optimal is 35 to 45%, higher end for men - you don't have this test.

TIBC: Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is 25.93% through range so at the lower end, again suggesting no need for additional iron

UIBC: Low in range indicates that you may have too much iron in your blood which may be due to iron overload syndrome (hereditary haemochromatosis).

High in range signifies iron deficiency - yours is 21.43% through range so again low in range and again additional iron not a good idea.

Ferritin: Low level virtually always indicates need for iron supplementation - yours at 50 (11-307) is 13.18% through range and this is where iron gets complicated. Low ferritin can suggest need for iron supplementation but every other test in your iron panel suggests you don't need it. So you just need to raise ferritin and nothing else. See what your current level is and maybe see if you can also have a new full iron panel.

[Fluffysheep in reply to SeasideSusie]

Thank you, that's really interesting. So, how does one raise ferritin and nothing else?!

Realistically I'm not going to be able to get this done for 8 weeks now, but the Dr usually agrees to any blood tests I ask so hopefully won't be a problem for me to request.

[SeasideSusie Remembering in reply to Fluffysheep]

So, how does one raise ferritin and nothing else?!

That's not easy to answer. For me, I raised my Ferritin by eating liver regularly and it didn't send my other levels high, but I can't say that would be the case for everyone. Maybe a good doctor with a good knowledge of iron has the answer but if your Ferritin level is anywhere within range, even very low, they won't be concerned.

[Fluffysheep in reply to SeasideSusie]

Not going to work for me as a vegetarian, but thanks!

[SlowDragon Administrator in reply to Fluffysheep]

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

[helvella in reply to SlowDragon]

Don't forget that Aristo is also lactose-free!

[SeasideSusie Remembering]

Fluffysheep

Have you had ferritin tested yet? It hadn't been done when you posted your results last time. Vitally important to have a good level, it helps thyroid hormone to work properly and helps with conversion of T4 to T3.

[Fluffysheep in reply to SeasideSusie]

Not yet. I can ask for that for next time (am seeing the Dr next Friday).

[SlowDragon Administrator]

looking through previous posts....couldn’t see any ferritin and iron results

Ferritin often an issue

[Fluffysheep in reply to SlowDragon]

Just added the last ones I had to a previous reply

[SlowDragon Administrator]

Also

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

[e-mail]

btf-thyroid.org/thyroid-fun...

Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal. There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.

[Fluffysheep in reply to SlowDragon]

I do have this print out, haven't had to use it yet but plan on taking it with me. However, she has been so adamant before about nothing being out of range I'm not sure it will help. I'll try though. She is the head GP of the practice, and she has pretty much said before that her hands are tied, she can't allow her patients to be out of range. I'm really worried she will drop what I'm currently on on that basis.

[SlowDragon Administrator in reply to Fluffysheep]

I don’t think you will get dose increase in levothyroxine ...and if you flag up current TSH...likely to have to fight to stop dose reduction

[Fluffysheep in reply to SlowDragon]

I agree, and this is what I'm worried about.