I think I have been hypothyroid for years, but GP reluctant to offer any treatment

[Sleepybunny21]

This will be a bit of a long one, but I am desperate for advice as I don’t seem to be getting anywhere.

I have suspected for years that I have an underactive thyroid, due to symptoms an family history (my brother, mother and other relatives on my mothers side have it)

I went to the GP in 2018 to discuss symptoms- exhaustion, weight gain, feeling cold all the time and low body temp, heavy periods, a lot of aches and pains, and at this time had bloods tested. My TSH on this test was 3.6, which I was informed was normal, and no action to be taken. My ferritin was right at the bottom end of normal. At this time, I also requested a print out of a previous blood test I’d had in around 2014, and on that test my TSH was 3.8, and my ferritin was around 8, so well under where it should be. This test had also been marked as no action needed.

I did some research, and suspected underactive thyroid, but just decided to wait and see how I felt in a few months. I’m pretty awful at being assertive with doctors- I think part of it is because I was diagnosed with depression when I was 16, and have been on various antidepressants in the past, which doctors tend to bring up and suggest my tiredness is because of depression. This is despite the fact that I consider myself recovered from depression, and most definitely do not have symptoms of clinical depression now.

I returned to the doctors in 2019 to request bloods with the same symptoms, along with a marked increase in aches and pains and he suggested running bloods again. The results were as follows-

TSH - 4.21 (0.34-5.60mu/l)

Serum Free T4 Level -8 (7.9-20pmol/l)

Serum Ferritin - 29 (11 - 307ug/l)

I discussed these results with GP, and he suggested returning in a few months an testing again, and I distinctly remember him saying in this appointment that as I was symptomatic, if I had another blood test with a similar TSH he would consider trying a low dose of thyroxine to see if it would alleviate symptoms.

Then of course covid happened, so I didn’t have a chance to return for another blood test until recently.

I made an appointment with you guessed it, the same symptoms but worse, and also the upsetting and exhausting symptom of constant Diarrhoea. I requested that vitamin B12, folates and celiac be included on the blood test. The results are as follows

TSH - 7.51 (0.34-5.60mu/l)

Serum Free T4 Level - 9.5 (7.9-20pmol/l)

Serum Ferritin - 28 (11 - 307ug/l)

Serum Vitamin B12 - 266 (120 - 625ng/l)

Serum Folate - 6.6 ug/l (>3)

I have just had a phone appointment with the GP about these results that has left me in tears. The GP said that I would have to wait three months and have another blood test with similar results, because to treat me now would be going against NICE guidlines. I pointed out that I have been symptomatic for YEARS, and asked if I could try treatment and see if it helped with symptoms, as they are ruining my life. He then started going on about how doctors cannot presribe something just because a patient asks for it, and that levothyroxine is a high risk medication, as that If he prescribed it today and I had a heart attack, he would be the one blamed for causing it etc etc. This makes me think that even if I go back in three months, hes not going to treat me, as he also said sometimes patients have symptoms and they look into it and can never find the cause and that it’s just one of those things.

I asked about the celiac test, which has come back negative. I asked what further investgation could be done into my bowel issues, and he said ‘What do you expect me to do’, to which I replied that hes the doctor. He reluctantly agreed to contact the gastro department at the hospital to be allowed to do a fecal test to check for immflamation, but said that he doesn’t have the authority to order this test, it has to be done by a consultant. I’m not holding out much hope that I’ll be able to get this test, as I can only immagine what hes going to write about me - probably “Hysterical female patient, worried but

I’m not really sure where to go from here - my partner is adamant that I should just change GP, however I am worried that other GPs will just be the same.

I’m not the most assertive person, and part of me just wants to give up and stay feeling ill and hope that it doesn’t get any worse. Another part of me knows that I’m only 30 and shouldn’t be feeling like this.

[Nanaedake]

It could be a good idea to change your GP. Your ferritin levels have been dire and you could ask for a full iron panel to include TIBC.

B12 is very low in range and you could check out the Health Unlocked pernicious anaemia forum for more information.

Have you got results for TPO or TgAb antibodies? Look back at historical blood tests to see if they've been checked out.

Visit a new GP and ask for:

TSH

FT3

FT4

Vitamin D

TPO antibodies

TGAb antibodies

Youv'e already got results for B12, Ferritin and Folate which need following up.

I don't agree that symptoms are 'just one of those things' when your ferritin and B12 are so low and no idea what your Vit D is, there are reasons why you should have symptoms.

Testing thyroid again in 3 months is a good idea but in the meantime I would get more complete thyroid tests including antibodies to determine if you have possible thyroud autoimmune disease developing or not. Low ferritin can prevent thyroud hormone from functioning well but if you have autoimmune thyroid disease developing then you will have antibodies and fluctuating thyroid results.

[tattybogle]

NHS guidelines say they "may consider" treating with levo if they have TWO, OVER-RANGE TSH results, taken 3 months apart.

So without having 2x over range TSH's it is a bit 'risky' for them to prescribe a lifelong hormone replacement.

So it does look like he's trying to start treating you .. but he was jumping the gun when he said last time ''if you get another on at this level.. i'll consider treating" , because the last one was not over range.

if you wait till they've got 2x over range TSH's .... then he can treat you without being accused of starting you on levo 'inappropriately'.

Sometimes it looks like you can get them to shorten the '3 months' bit...perhaps with your history they might consider 6/8 weeks .. it's worth asking.

[nellie237]

I agree with Nanaedake and your partner........you need to change GP asap. Your GP is a pig and is never going to help you get to where you need to be. Levo being a high risk medication is absolute codswallop.

Some GP's do prescribe Levo with your readings, especially with the family history. Mine did on very similar readings to yours ie. TSH 8.6 (0.35 - 5.5) & T4 11 (9 - 21).......she requested antibody testing on a follow up test a month later to confirm diagnosis.

[shaws Administrator]

Change your doctor and tick off the symptoms you have from the list below. According to your results you have hypothyroidism although doctors have been directed not to diagnose until TSH is 10. That's why blood draw is recommended to be at the very earliest possible as TSH is highest early a.m. and drops throughout the day:-

thyroiduk.org/if-you-are-un...

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose (if prescribed) and the test and take hormones afterwards. (by hormones I mean levothyroxine (also known as T4 or a T4/T3 combination). The TSH (thyroid stimulating hormone) rises when our thyroid gland is failing and the aim is to bring it down to 1 or lower.

Request also, B12, Vit D, iron, ferritin and folate.

Put your results onto a new post and always put the ranges. The reason for ranges is that labs differ in their machines and it is helpful for members to know with the results are, so that they can respond.

I hope you feel better soon as I know how awful it is to feel unwell yet told there's nothing wrong.

p.s. if you click on my name you can read my journey to being diagnosed. Many members have similar stories but I am well now because I had the help of Thyroiduk.org.uk who is behind this forum and at the forefront of trying to change attitudes of the medical professionals.

thyroiduk.org/if-you-are-un...

[Hidden]

Diarrhea could be lactose or gluten (even though you aren’t celiac) - I was fine with lactose until a few years before diagnosis but then I found I couldn’t tolerate it/IBS type symptoms - daily runs (didn’t know it was lactose though). I have ups and downs with it depending on how my body is. I didn’t solve this symptom until I was more aware through this forum; and have since quit gluten (I’m not celiac) and this has largely stopped the diarrhea.

[shaws Administrator]

My faith in the medical professionals has been near dissolving.

First my mother died, painfully, due to her GP stating she no longer needed B12 injections - She had pernicious anaemia. My sister and I had thought that was 'good' never imagining the hell that was ahead.

My daughter, very, very, severely disabled now and we've only been able to meet once (on doctors' orders) during the lockdown. When young (before 5 years of age) taking her to GP several times complaining of painful legs that she had to sit if we went out and when I mentioned to him that my sister had rheumatoid arthritis he shouted at me for 'putting ideas into her head'. She is now so severely crippled with R.A. and had so many operations on her joints - some of those doctors have been excellent but obviously damage cannot be repaired. Her surgeons who've operated upon her joints etc look after her briliantly as well as they can due to the damage on her body/bones.

Sometimes we have a battle on our hands through no fault of our own.

I am thankful now that my T3 has been reinstated.

[humanbean]

and that levothyroxine is a high risk medication, as that If he prescribed it today and I had a heart attack, he would be the one blamed for causing it etc etc.

Your doctor is just making stuff up as he goes along. He clearly has absolutely no idea what risks there are in prescribed thyroid hormones.

You should read this thread - and honestly, in an ideal world, so should your doctor :

healthunlocked.com/thyroidu...

[Sleepybunny21]

Thankyou for your advice everyone! I think changing GP will be the way to go long term, as I still feel upset about the most recent appointment. I'm worried though that If I change now I will have to first make an appointment with the new GP, go through everything again and be back to square one, with having to have two blood tests three months apart. I think I will wait the three months and have my net blood test with current GP, see what he says and then change GP, so I will either be in a position where he says yes I will treat or no, and at least if he says know I can then go off to new GP with my two bloods results.