Hello, this forum is fantastic! Thank you for your support.
I've just received my test results. Bloods were taken 8:30AM, fasting, no levo 24 hrs prior. My TPO increased from 100 and TgAb from 532 since April 2019.
I'm currently on 75mcg levo, for which I had to really push my GP to prescribe on TSH 1.9 - I increased the dose myself in the end. I'm also on Low Dose Naltrexone initiation - currently on 3.5 ml. Supplementing vit D + K2 MK7, iron, selenium, magnesium, omega 3. I'm gluten and dairy free again - I went on hols and pigged out 🙄
Do I need an increase in levo? My GP will refuse.
Thank you so much for your reply.
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Jalisi
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With free Ts at the bottom of range it's highly likely you'd benefit from a raise. 75 mcg is not a very high dose. I needed 150 mcg just to feel remotely human. Granted, we are all different, but I'd say you need more than 75 mcg.
Your doctor will most likely only treat your TSH which, unfortunately, won't tell you much once on thyroid hormone replacement.
Thank you for your reply, I was worried I might have another fight on my hands. My current symptoms are fatigue, despite sleeping 10 hrs, muscle pain and weaknesses, dry eyes, memory and concentration problems, dry skin and my thyroid is getting bigger which makes my throat feel tight.
I take it your TSH was out of range (14) at the time of initial diagnosis, and then went down as you started levo?
I agree with Greygoose that most doctors lack training in this area. They just go by the TSH and don't look at your free Ts. You should always have both free Ts, FT4 and FT3, tested, as your FT4 levels can look optimal (like mine did), but if you have poor T4 to T3 conversion, taking more T4 won't help. That's why you need to have your free T3 tested as well since T3 is the truly active thyroid hormone.
I'm not saying you have a conversion problem. It's possible all you need is a raise in your FT4 levels. But, if your FT4 levels rise as you add more levo, your TSH goes down further, and you continue to feel hypo, you should consider this possibility (common in people with Hashimoto's).
Thank you thecat68, Yes my TSH went down from 14.7 (November 2018) to 6.8 and that's when they finally agreed to levo trial, this was February.
I hope it's only the case of levo increase which my GP probably won't authorise. I think she'll have kittens when she sees my TSH.
I have started to take private blood tests to get the full picture. I talked to my GP about the NHS thyroid blood tests being only TSH, she requested full thyroid panel which I guess will come back TSH only if that is within range, due to lab not investigatin further. I agree on GP's being completely useless on this condition, I have seen 6 so far and none of them said anything that made sense, they just read their guidelines, some haven't even bothered to follow NHS guidelines.
There's no science in medical profession when it comes to Hashis. We're left to suffer or fix it by ourselves. Thank goodness for this forum and the wealth of knowledge shared here by its wonderful members.
Many GPs seem to think that a TSH of 1 or under is too low. It isn't if we've been diagnosed as having hypothyroidism as that is the recommended number if we're hypo and on levo. Most seem to think that 'somewhere' in the range means we're on an optimal dose whilst ignoring clinical symptoms and they seem to know none at all. Their emphasis is all upon the TSH (which is from the pituitary gland and it is this which rises if we're hypo).
Hi Shaws, thank you for the link. You're right, My GP told me if the numbers are too low, she will reduce my medication even if it will make me unwell. How do you deal with that?!
What were your Free levels when you doctor finally gave you levo?
As you have Hashi's, all levels are bound to jump around a bit from time to time. Which makes things extra difficult. But, your doctor should not be dosing by the TSH, it's not reliable. And, looking at your levels there - Frees compared to TSH - makes me wonder if you have pituitary issues.
So, was your TSH 1.9 when your FT4 was 12.7? We really need to look at these results together, to understand what's going on. In someone with an FT4 that low, you would expect your TSH to be high. If it isn't, then the problem is not the thyroid but the low TSH. TSH is produced by the pituitary, and sometimes, for various reasons, it cannot make enough TSH to stimulate the thyroid to make enough hormone. The fault could be with the pituitary itself (what we call Secondary Hypo) or with the hypothalamus, which has to stimulate the pituitary to make TSH (what we call Tertiary Hypo).
I wouldn't expect a GP to know any of that, because they just don't get enough training in the thyroid. And, there for people with pituitary/hypothalamus problems tend to go undiagnosed with their hypo, unless they happen to have read about it, themselves, and enlighten their GP. So, that's what you've got to do. Because I'm pretty sure you have a problem with your pituitary/hypothalamus. And, you need to see an endo.
Have you had a bang on the head at anytime, an accident or something? Or severe bleeding during childbirth? Those are some of the things that can cause Central hypo (secondary of tertiary hypo). Also, benign tumours. But, it needs an endo to authorise a head scan to see those.
Well, if you're TSH has gone up to 14, there's no problem with your pituitary. It's probably just the Hashi's messing you about. The TSH doesn't move as fast as the Free levels, so could be that it hasn't caught up yet.
Hi SlowDragon, thank you for your reply. I had these tested in April and you're right, I was low on Ferritin 64.6 [13-150] and vit D 62.8 [50-175] which I'm supplementing, the folate and vit B12 was fine. I will retest these privatly in 3 montsh due to cost or try and ask my GP to test.
See if you can persuade GP to test as per New NHS England Liothyronine guidelines July 2019 - clearly states on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Also to test vitamin D, folate, B12 and ferritin to check for deficiencies
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/
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
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