Subclinical Hypo but symptoms have returned - advice please

[Coopea]

Hi, I’m just looking for advice on how to approach the GP (it’s a teaching practice so Drs are never the same).

There is a family history of thyroid problems (hypothyroidism with an immediate blood relative) and numerous other autoimmune diseases.

I started experiencing non-specific symptoms (uncontrollable tiredness, weight gain, joint pain, swelling and stiffness along with hair loss and a loss of menses) in March ‘20 and I felt awful! It took 18 months from then before a GP listened to my symptoms. My labs up until treatment are as follows;

Mar 20 TSH was 3.77, Vit D 28, ESR 15 and CRP 11.

Oct 20 TSH 4.13, CRP 15, ESR 26, Vit D 25

Apr 21 TSH 6.54, Free T4 12.9

June 21 TSH 6.43, Free T4 13.9, TPO ab 35.9

June 21 i was diagnosed with subclinical hypothyroidism and started on levothyroxine at a dose of 25mcg and was on mercury pharma

Jul 21 TSH 3.21

Oct 21 2.84 - I started seeing the return of regular monthly menses although slightly longer than 28 days (32 days) and my symptoms disappeared

May 22 3.62 - my brand of levothyroxine began chopping and changing between mercury pharma and wockhardt. My menses disappeared again and felt a little more tired than usual but nowhere near as bad as I felt or feel now.

July 23 5.01

Aug 23 4.04. Free T4 15.4

my symptoms have started to return however I have new symptoms - intermittent pins and needles, lack of concentration, brain fog and I’ve now started to lose the tails of my eyebrows. I feel awful again and have asked the GP for T4 to be done at the same time. I am aware my labs are in the ‘normal range’ but I don’t feel normal and it’s now starting to affect my relationships, social life and work. Me and my partner are also actively trying to conceive and I have recently been diagnosed with primary infertility.

I already take a monthly dose of Hux D3 at 20,000 IU and all my other labs have come back in normal range.

I have a teleconsult next week, unless I can get one sooner but is there anything I can ask my GP? I wondered if the chopping and changing is brands could have had an impact?

Thanks in advance

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start.

I'm assuming you're still on 25mcgs Levo which is a low starting dose. The usual process then is to retest in 6-8 weeks and increase by 25mcgs, repeat until your TSH is at or just under 1.

You need to insist on a dose increase to 50mcgs Levo.

So having been left on 25mcg Levo your vitamin levels will have suffered. When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.

[Coopea in reply to Jaydee1507]

Hi there Jaydee1507 and thank you for your response. I believe I’ve filled in my profile but I will double check.

I can confirm I am still on 25mcg of levothyroxine. And my last full bloods came back as everything within the reference range. I will raise this again. I was not aware of the low stomach acid so thank you for the education.

I will ask my GP to consider an titrating the dose upwards and raise the request about sticking with the same brand. Thank you for your advice.

Unfortunately the GP rarely explains the results even after raising questions and the only information on a TPO ab test I had was that is was 35.9 U/ml so I am unsure if antibodies have been detected or not. After my last GP appointment where I was told to skip a few meals (which I thought was bizarre) I’ve swapped to non-dairy milk and I tend to opt for veggies and lean meats for meals.

Thank you for your advice though, it is much appreciated.

[Jaydee1507 Administrator in reply to Coopea]

I can't see anything in your profile.

It's no wonder you have symptoms on just 25mcgs Levo. You will need to take charge and start driving your treatment. Be a little bit assertive with your GP and read around here to see that you are not alone and to gain useful information to back up your knowledge and give you confidence to challenge your GP.

Just being within the reference range is not good enough. Your TSH needs to be at or below 1.

The NHS only test one type of antibody (TPO) but privately you can get Thyroglobulin (Tg) antibodies tested. What was the reference range for your TPO test (numbers in brackets after your result number)?

[seveneleven]

I think the NICE guidelines for thyroid treatment around pregnancy/fertility are clear that TSH should be a lot lower if trying to conceive, so that might be worth raising with them to help you get an increase in levothyroxine. 25 is a tiddly dose so no wonder you're feeling worse - 50 is usual to start with unless you're elderly or have heart problems, and it's standard to increase dose after 6-8 weeks. You absolutely should not have been kept on such a low dose for so long - that's just bad clinical practice. So I would go armed with the guidelines and your results and really emphasise that you've been trying to conceive and not been successful - this seems to be one of the few times when they actually take thyroid seriously.

[Coopea]

Hi seveneleven,

Thank you for advising regarding the NICE guidelines. I am aware that other thyroid support websites advise of a TSH <2.5 prior to conception.

I’m under 30 and have no heart conditions. The only thing that concerns me is that despite my TSH being in the eyes of my GP “satisfactory” because it’s in reference range, TSH has slowly been continuing to rise albeit a slight dip on my latest test but that was taken in an evening.

Thank you for your advice, much appreciated.

[seveneleven in reply to Coopea]

Yes you're definitely undermedicated - hence the rise in TSH. Unfortunately few GPs have adequate/any real training in how to deal with thyroid and only go by 'within range'. Your best bet is likely to be using the fertility argument, because having a rising or high TSH and being undermedicated in pregnancy is dangerous, so they do seem to pay attention then. If you really get nowhere and try a couple of different GPs, think about seeing a private doctor if within your means. Far from ideal, but if you can't get the treatment you need and are getting more unwell and experiencing infertility, it may be worth considering. Good luck!

[Sparklingsunshine]

I'm hearing of more and more members who have been started on a dose of 25mcgs of Levo. I dont know if this is a trend or what but normally its 50mcg unless elderly or you have heart problems.

I was diagnosed in June 2020 with a TSH or over 7, so not much higher than yours. I did however have below range and falling FT4 levels but I'm glad they put me on 50mcgs. I'm quite a bit older than you and not trying for another baby lol.

I did get the same crap response though, once my TSH was somewhere " in range" that was good enough according to my GP. My body argued differently and on 50mcgs my TSH went up again and FT4 continued to fall, FT3 levels scraping along the floor. Eventually I ended up on 150mcgs of Levo but now take a combo of Levo and NDT, which I self source.

As the others have said you need the next increase of Levo and very possibly more afterwards.

[Jazzw in reply to Sparklingsunshine]

I think it’s because a lot of doctors don’t understand that you can’t simply “top up” failing thyroid function. They’re treating levothyroxine as though it’s a vitamin supplement and of course, it doesn’t work like that. Taking levothyroxine replaces your own thyroid functionality over time, even a tiddly dose like 25mcg. And 25mcg is likely to be less than one’s already failing thyroid produced, so the long term effect is that you feel worse than you did before you started!

Raising the dosage is the only way forward. We shouldn’t have to educate our GPs but so many of us have had to do exactly that. I shudder to think how many people are out there struggling on ridiculously insufficient amounts of levothyroxine.

[Coopea]

I just thought I would provide an update.

I’ve had a consult with the GP who frankly was dismissive of the rising TSH, the re-occurrence of symptoms and the fact it’s making my day-to-day life impossible to continue with.

I rhymed off each of my TSH results and advised that despite it being within range I didn’t feel like I did in the October 21 a few months after the levothyroxine kicked in.

I hit her with the NICE guideline about alleviating symptoms and the British Thyroid Foundation’s pre-conception TSH and she quite frankly did not care.

The response I received was “There is nothing I can do, I will not be increasing the dose, as I am bound by the guidelines as your labs are within “normal range”.

7th Aug 23 (19:15PM yes I’m now aware of the patient - patient protocol on morning tests) TSH 4.04 U/ml (0.49 - 5.23)

7th Aug 23 (19:15PM) T4 15.4 (11.9 -22.7) 34.82% through range

I asked what do I do about my symptoms, how can I alleviate them and regain a regular flow (i haven’t seen one in 6 months) she replied “sorry there is nothing I can do”.

Over the last 3yrs I’ve had theses symptoms and been for a battery of tests, scans etc. I’ve just been bounced from pillar to post.

I admit I got a little teary and now I’m considering contacting PALs and a letter of complaint to the practice.

I tried to advocate my own health and on this occasion it didn’t work.