Also see preceding posting - GP would NOT refer, in my profile.
Note: TSH History.
5.3 March 2011
4.2 Feb 2012
3.7 July 2012
complained still not well finally asked for referral but refused - tests taken
23rd Jan 2013 4.4
Finally got the results of VitD, B12, Iron, Serum Parathyroid Hormone, TSH.... but receptionist
not allowed to print off details for me, they belong to lab, so made appointment for GP - again - as he can.
Although I was told the Locum GP could refer me on , she would not refer me last week for a specialist and tried to diagnose Depression or CFS. I wouldn't accept as I am still experiencing a few Hypo symptoms.
So the above is the only information I have.
I am still concerned I feel rubbish after 1.5 years on 50 mcg Thyroxine.
The chemist tried to deliver Iron today whilst at work (not requested) as they had received my results before me!!
Any solid advice? or should I persevere? I'm ready for giving up.
Thank you.
Written by
PoppyRose
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The rights in NHS medical records "belong" to the Secretary of State for Health. Many times people are told otherwise but, while GPs/nominated data holders are the protectors at surgery level, neither they nor the labs own the records.
If your TSH is reflecting your thyroid hormone levels, it is too high. They should offer you 75 mcg now, test again in a few weeks, then review.
This is a quote form the very recent MHRA Levothyroxine report:
Once diagnosed, patients normally start the estimated full or just below the full replacement dose immediately unless they are over 50, have severe hypothyroidism or have cardiac problems, in which case, the levothyroxine dose is gradually increased from an initial daily dose of 25 - 50 mcg levothyroxine. This is then increased by 25 – 50 mcg/day at 3-4 weekly intervals until a normal metabolic state is attained.
Thanks for the link, obviously my surgery are prescribing contrary to guidelines. I need another appointment/conversation with a resident GP I think, build a 'working' relationship with him and track with evidence. To date I've seen too many different GP's.
I'm not sure how the 'full' dose is calculated -is it what you are lacking to make up the difference or is it the '75' you state? Will have a good read at the document; either way I feel I'm low.
They re-prescribed iron but haven't noticed the rise in TSH this time - that worries me.
That document is not a huge help for you - I put the link so you could see where it came from and its context. And tell others if needed!
They do not explain how a full dose is calculated and, I think, in your case it would be a case of starting at 50 mcg and incrementing the dose until you feel better and the blood results are acceptable. But certainly not leaving it for months and months without even considering an increment.
I did blog about formulas for estimating full replacement dose the other day - but really that is only intended for people having total thyroidectomies.
OK thanks for that, interesting reading though. I'm preparing myself for yet another stressful conflicting appointment... and they're telling me to reduce stress in my life!
The most important thing you need is the "proper" thyroid tests eg. TSH, T4 and Free T3 + ranges. Your treatment cannot be right without these. You are right to push for an endo, see the least difficult doctor in the practice, holidays etc.! However first make sure who you want to see as like everyone they vary, if you have a bad doctor then you will have a problem. A good endo looks after all the things you mention and will test for the other connected things too.Unfortunately, you cannot insist on a referral but you may need to be quite forceful and say that you are considering that you are having the wrong treatment.I had a huge battle, years ago, to have treatment and referral etc. so I do know and it is all so much harder now. I actually had an apology by the doctor and an acknowledgement that I had been right! They do not like that as all petrified of being sued.! This is one time you must be firm even if it means being difficult. Your heath matters above every thing.
Yes your reply does help me a lot, I just feel I'm not wrong and certainly not exaggerating or being a hypochondriac. So unfortunately it's good to know how others have managed.
I'm aware and agree with you first statement but I have asked and they will not (the labs apparently) do other tests as long as result show within their range. End of. Which I am having a major battle with. I am going to try and book in with a GP although he has fobbed me off too, to query my rise in TSH this time and again a referral now I have more clout.
I'm glad you won your battle and that they had the common decency to apologies - even if it was to 'pacify' you.
I will let you know how I get on.
Coincidentally - I rang the surgery to ask (as suggested by another clinic) why my daughter's blood results hadn't been received by another clinic in time for her appointment this morning. It was the same receptionist I dealt with yesterday (see above) and the 1st thing she quoted me was that as she is 18 I am not allowed to ask what the results are.... NO... I just asked why the clinic hadn't received them. Talk about not listening!
Hi Well if now, I would have had a private, on line test,, not possible then. I use Blue Horizon, see TUK, bloods My endo and I know that Free T3 is the most important test for me. I can no longer have it NHS at the Labs where I live. I pay £61 which includes £10 discount ( quote TUK10) and that is TSH, T4 and Free T3. As they use/are a well known Lab called TDL ,all doctors recognise them and will treat on there results. If it agrees with what the GP said then, I would just not tell or show them!!
Yes I have had a look previously at the tests on this site but didn't think I'd need to go down that route. You have just 'nudged' me again on that - so I think I will now.
Hi Realise I did not really answer your question. I have just come out of hospital with kidney failure, again so a bit dopey! My PTH is over 10 and has been for ages. The only way of telling if it matters is by having a PTH calcium and D test at the same time AM. None of the GP`s at my practice knew this! if all high , especially if high D or out of normal for you, and they ar all high , then you need a thyroid ultra sound and a nuclear scan of PTH and thyroid. it is not nasty just a pill and lots of lying down, they usually do a CT at the same time. My result was enlarged thyroid with nodules, PTH OK, I would normally have then had a biopsy, fine needle but cannot have any invasive treatment as so ill ,it would kill me.If problem with lump etc on PTH usually successful surgery What ever the cause
I hope that answers the question better. You could still use Blue Horizon, it is really important to have all 3 tests together and AM
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Desperate to feel well !!
Levothyroxine and itchyness
What is wrong with me?
help with what to do next
Got my results back - any help?
