Just wanted to come on here and share my frustration. I know this is an issue that so many of you have described in the past. Had a phone call from my GP this morning after my latest GP blood test last Friday. Some of you may have seen I also ordered a full panel from Medichecks and posted the results on here. My TSH reading from my GP checks were a little lower in comparison (19.5 from Medichecks and 12.7 from GP). There was an hour difference between the times and one was on a Monday and one on a Friday.
Anyway, he was reluctant to increase my dose of Levo (currently 50 and 75 on alt days). I was hoping to go up to 100 but he reluctantly advised 75 each day instead of alt days and a retest in 8 weeks. I’m just so frustrated because as with most, he’s only looking at that one marker and wants my TSH to be close to 4. I explained to him the Gynaecologist who he referred me to (and who actually picked up the thyroid issue!!!) needs it to be closer to 1 due to conceiving issues. He goes on to say he’s not comfortable with that and it’s dangerous etc etc. And if I’m getting all these doctors involved it’s going to be confusing. I honestly felt like he slapped me in the face. I just want to get better and get myself in a place where I can safely start a family!! I just feel so trapped by it all. Safe to say I burst into tears as soon as I put the phone down.
Sorry guys, just feels good to get it off my chest to people who really know how this feels.
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I have said this before on other threads my Dad takes 100mcg because he is classed as elderly at 78. I personally think he is under medicated because his TSH is 5. I think your TSH should be 1 or lower and your T4 and T3 should be in the upper third of the range. I would change your doctor after the lockdown because they clearly know nothing about thyroid disease and are keeping you ill. Just to add my TSH is 0.38 and I am on no medication and I feel very well when my TSH was 0.80 I felt really ill because my T4 and T3 were very low in the range. We are all different but I do know that most healthy people have a TSH of about 1 because my son in-law's is 1.05. He doesn't have thyroid disease and is fit and healthy at 29 years of age.
I totally agree with you. I said to him I know my own body and how I feel! Just so frustrating because there is so much information out there that they clearly aren’t reading!
When I had a TSH of 9 I could not even get out of bed so you must be feeling dreadful. I wouldn't leave it too long to find a doctor to help you and you can always self medicate as a last resort. That is what I have to do because my GP would not help me. I'm afraid after 12 years of no support from my surgery I don't bother them with my thyroid health now. Last year I was admitted to hospital with a thyroid storm so I thought my GP would do a more detailed blood result .... no such luck! all they tested was my TSH and I wasn't even advised to see a Endocrinologist. I have now decided to do my own private blood tests and buy my own NDT when I need it. Unfortunately this is what a lot of us have had to do and this is why sites like this one exist because we are not getting any help or support from doctors when it comes to thyroid disease.
Exactly that! I feel I am ebbing more towards that direction although I will see how far Levo will get me and go from there. I can’t believe how they don’t recognise the importance of those tests, especially after your Thyroid Storm. It’s disgraceful!
My TSH reading from my GP checks were a little lower in comparison (19.5 from Medichecks and 12.7 from GP).
... he was reluctant to increase my dose of Levo (currently 50 and 75 on alt days). I was hoping to go up to 100 but he reluctantly advised 75 each day instead of alt days and a retest in 8 weeks. I’m just so frustrated because as with most, he’s only looking at that one marker and wants my TSH to be close to 4.
This GP is a prize idiot. Find another one, or if you are stuck with this one you need to fight.
The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .................. This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L ............ Likely under Replacement
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
I explained to him the Gynaecologist who he referred me to (and who actually picked up the thyroid issue!!!) needs it to be closer to 1 due to conceiving issues.
If you are under a Gynae or Fertility Clinic due to difficulties conceiving, then they are the ones who have the knowledge and evidence of where your TSH needs to be for conception and a successful pregnancy, and that is below 2.5
If you have an underactive thyroid (hypothyroidism)
If you are planning a pregnancy you should speak to your GP to arrange thyroid blood tests and ideally aim for a Thyroid Stimulating Hormone (TSH) level of less than 2.5mU/l at the time of conception
It is recommended that your TSH should be less than 2.5mU/l in the first trimester of pregnancy and less than 3.0mU/l after that.
How should I manage a woman who is preconception or pregnant?
Arrange a referral to an endocrinology specialist for all women with overt or subclinical hypothyroidism who are:
Planning a pregnancy
Check thyroid function tests (TFTs) before conception if possible.
If TFTs are not within the euthyroid range, advise delaying conception and using contraception until the woman is stabilised on levothyroxine (LT4) treatment. See the CKS topic on Contraception - assessment for more information.
Discuss with an endocrinologist if there is any uncertainty about initiation of treatment or what dose to prescribe while waiting for specialist review.
See the section on Initiation and titration in Prescribing information for detailed information on the initiation and titration of LT4 therapy.
Check that the woman understands there is likely to be an increased demand for LT4 treatment during pregnancy, and her dose of LT4 must be adjusted as early as possible in pregnancy to reduce the chance of obstetric and neonatal complications.
Advise the woman to seek immediate medical advice if pregnancy is suspected or confirmed.
Offer advice on sources of information and support, such as the British Thyroid Foundation leaflet Your guide to pregnancy and fertility in thyroid disorders.
Pregnant
Check TFTs immediately once pregnancy is confirmed, and interpret results using a pregnancy-related reference range.
Discuss urgently with an endocrinologist regarding initiation of, or changes to, dosage of LT4 and TFT monitoring while waiting for specialist review.
Thank you both for taking the time to reply to me. I agree with you both wholeheartedly. I’m naturally not very confident when speaking to GP’s etc so I do find this very difficult. I thought I was more assertive that I would usually be this morning but still had no effect on his response. I’m hoping I can push a bit more through the gynaecologist to maybe be referred to an endo because the GP refused after promising he would after my last bloods. I just feel like the year is passing me by and I’m not getting anywhere. I’m going to get those links printed and highlighted for when I can actually see someone face to face. I know this is a long journey but I feel the frustrations are hard to bare sometimes. I know you all understand.
I’ve thought is it worth me going private? I just don’t know if I’m jumping the gun sometimes. I just want to get and feel better for myself and to hopefully improve my fertility.
I’ve started helping myself more with the order of vitamins en route to help get them to where they should be. It just would be so refreshing to have a heath care professional who is on my side.
Always a bit of a gamble. I think you'd need a recommendation.
Maybe you can send those links to your GP and ask him to read through them, maybe discuss with our Gynae to see if this will help. Who knows when face to face appointments will become available again. My surgery wont do them although patients who have to have regular injections are going to the surgery, just that all appointments for the GP are phone at the moment.
Yes that’s what it’s like with me too. I think I’ve read previously you’re in North Wales? I’m in South Wales 🙂. I’ve had a little research into private care and as you say it’s a pick and mix situation. So hard not to let these things get on top of you sometimes.
Was feeling great this morning as I did my repeat folate test for Medichecks and managed to fill the container with ease, I thought this day is going so well and then came down with a bump.
I think your GP needs to read the NHS guidance on TSH and pregnancy/conception. Even the NHS says it needs to be 2 or less (and why does he think he knows more than the gynae?) I would complain to the gynae and let them to write to GP or to prescribe for you. I would also see about changing GP to one with more of clue (who is actually capable of reading guidance) if you can
Yes I think I need to have a look to see if I can find someone in the surgery who would be more likely to listen. So hard because you never know what you’re going to get isn’t it and with not seeing them face to face it’s even harder. The gynaecologist has been great, I did see him privately to begin with but then he added me to his NHS list so it is all a waiting game. I’m really hoping I can just move things forward. I’m impatient anyway, but all this waiting and uncertainty is hard to handle sometimes.
Like other posters, I would try and see a different GP. It is also likely to benefit you to take someone with you to appointments (or on zoom or whatever) - for some reason a lot of GPs take up more seriously when we can produce a MAN at an appointment. But particularly when you are as ill as your TSH suggests, when your concentration and confidence are likely to be under pressure. Someone who can be politely angry on your behalf and fight your corner will be a real help! Good luck x
Hi Fuchsia, I think I’m going to have to try and see someone else as you say. So difficult to know who to see isn’t it but something has to be better than this! Thank you again
Before considering TTC TSH must be under 2.5 and all four vitamins optimal
Also ....guidelines by weight might help push for dose increase
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Thank you SlowDragon for those very useful links. I will definitely be reading up and keeping copies for any future calls/visits. It so uncomfortable trying to approach these things with a GP that just doesn’t want to hear it. I’ll pick myself back up tomorrow I’m sure and start again.
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