Armed with your advice i had a telecon with GP yesterday having requested by econsult a rise in levo from 75 to 100.
I was quite upset (or much ruder words) by the end. He was at home and clearly had two small children with him chattering and playing which I found hugely distracting 😡and I had trouble hearing everything he said.
He wouldn't consider the Monitor your health results as they were 'from a different lab', so only talked about the TSH result he had of 0.51 (0.35-4.94) and said it was too low to increase dosage.
He asked about symptoms, I said I felt no different and still tired. All my bloods are OK so he went through a CFS questionnaire and when I tried to give context he said 'Yes or No answers'.
His conclusion was to refer me to a CFS clinic🙇♀️. Since glandular fever when I was 18 and especially through my twenties I had post viral fatigue that was debilitating but I seemed to grow out of it with careful diet and lots of sleep but I still get more tired and needing more rest than my friends.
He's made me doubt myself.
My questions are:
a) I had no symptoms when hashi's was picked up but TSH of 22 and T4 of 8. My figures are now all back in normal range but surely I should have felt some difference in my health and wellbeing after 7 months on 50 then 75mcg of Levo??
I don't get how taking a lifelong drug isn't having any noticeable effect
b) I haven't got CFS 100% sure of that considering some youngsters I know with long covid which is a nightmare and i know by now when i just have to rest. I don't want to appear awkward so will go along if a referral ever happens but what a waste of time! Any ideas what else could be stopping me from feeling benefits of Levo?
I was still so cross this morning I nearly didn't take my Levo out of rage but thought that would be cutting off my nose to spite my face!
I could see a private endo i guess but so many bad experiences of doctors not believing i had post viral in my twenties means I don't feel strong enough emotionally just now to see someone who might just tell me to take the 75mcg and stop making a fuss.
Sorry for the long rant...
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CinnamonNutmeg
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I'm so sorry you had such a negative experience and how unprofessional of that doctor to have kids within earshot of confidential patient consultations. Monitor My Health is a lab based in Exeter, they are used by NHS hospitals in the West of the UK, so perfectly legit. Sounds like GP was being deliberately awkward.
I would advise trying a different, more competent GP. 75mcg is only one step up from the starter dose so very unlikely to make you feel tickety boo. Unless you are a very petite person.
I would also be inclined to make a polite complaint about the sheer unprofessionalism of said doctor. Its not acceptable to have family members able to hear highly confidential information and not acceptable for the doctor not to be able to hear you clearly or you to hear them. His childcare issues are a him problem, not a you problem. Was it a GP from your surgery?
Sorry it was a waste of time - but once on any form of thyroid hormone replacement it is essential to be dosed on your free T3 and Free T4 readings and not a TSH seen in isolation or with a T4 sometimes ' thrown in ' for good luck !!
I fully understand that in primary care many thousands of patients are being dosed on just TSH readings which is also a waste of time -
though this saves the NHS money as by not running the appropriate blood tests and therefore not ' seeing ' the disparity in T3 and T4 readings - treatment remains T4 monotherapy - the cheapest treatment option - which does suit many thousands of patients -
as once on a high enough dose of T4 there will be enough T4 to convert to a decent level of T3 on which the body runs.
It's a bit like filling up the car petrol tank to just 1/2 way and expecting it to get you from John O'Groats to Lands End !!!
Is there a different doctor who is focused and who may see your results with the light ' on ' -
and Monitor My Health is run by an NHS team at Exeter Clinical Laboratory based within the Royal Devon & Exeter Hospital - so this comment does not hold water either.
It seems especially difficult for people with a thyroid Auto immune disease as they are liable to erratic thyroid hormone production so not ' as stable ' as others - and follow up tests for any underlying issues such as celiac and PA and testing for sensitivity to gluten, wheat dairy etc seem a growing issue with AI diseases.
You might like to read around on the research of Dr Izabella Wentz who writes on such issues and herself dealing with Hashimoto's AI thyroid disease. thyroidpharmacist.com
but surely I should have felt some difference in my health and wellbeing after 7 months on 50 then 75mcg of Levo??
Not necessarily! 50mcg is only a starter dose!
Improvement comes with the correct dose....but so often they don't see beyond their computer screens or listen to the patient.
You need a full thyroid test...
TSH, FT4, FT3, vit D, vit B12, folate ferritin ....it appears you have had thyroid antibodies TPO and Tg test
At the very least test TSH, FT4 and FT3
I suspect your T4 to T3 conversion is poor and as a result your FT4 is relatively high which will cause the low TSH......which is wrongly influencing him!
TSH is not a reliable marker once thyroid hormone is initiated ..... it fluctuates during the day.
You are not making a fuss, your concern is wholly justified. I would be using ruder words too ....and have done so!!
CFS is a syndrome not a disease....it's a collection of unidentified symptoms
I was diagnosed with both CFS, FMS and several other syndrome type conditions.....all of which I consider to be the consequence of low (cellular) T3
Research ( follows) shows one explanation for CFS/low T3
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
GP should understand that Monitor My Health is a not for profit NHS fund raising initiative.....his excuse about their results has more holes in it than a sieve!! The lab is used by the NHS!!
Can you see another GP because this one appears to be as much use as a chocolate tea pot. Complain to the Practice Manager if you feel you are being gaslighted....you should not have to compete with noisy children during a consultation.
Don't doubt yourself, be strong.....you probably know more that that child minding GP!!
TUK have a list of possible endos....ask the office
Bob Marley's words got me through some challenging times
"You never know how strong you are until being strong is the only choice you have."
Arrange a telephone consultation so that you can ask for a referral, you might even get a different GP which might make it easier. But still…
a). I would ask (politely insist) on a referral to see an endocrinologist rather than the CFS clinic.
b). If necessary, tell him that his reason for not accepting your MMH results is not good enough. Your blood test was carried out by a regulated NHS lab and is perfectly valid.
Monitor My Health is based within the Exeter and Devon NHS hospital.
“…the idea behind Monitor My Health came from the Academic lead of the laboratory. Monitor My Health is run by the NHS team at Exeter Clinical Laboratory, based within the Royal Devon and Exeter Hospital. The laboratory already offers a first class service to more than 300 GP practices, independent healthcare providers and community hospitals.
[…] Our laboratory professor, Tim McDonald (Consultant Biochemist in blood sciences) has won several awards for his work including the ACB professors prize 2016 and the 2019 NHS Excellence for Improving Patient Outcome award. Tim is also one of two to be nominated for Healthcare Scientist of the Year, out of 50,000 working in the UK. We are a not for profit NHS fund raising initiative. monitormyhealth.org.uk/our-...
c). Post your results here as others may be able to give some advice.
Unfortunately even if they did accept private results I find that they don’t seem to understand FT3, so it’s all a bit hopeless, especially if it’s in range but low, they just say it’s in range.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
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.
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thanks all, some good advice and support from you all.
This bloke appears to be my GP now, you don't get to choose, you get given an appt, take it or leave it. He doesn't impress me at all although tbf i think he's trying to help - from a place of ignorance. I'm still mad about the kids, but i try and have as little to do with doctors as possible so don't want to make an issue of it. I have been on another repeat medication for several years and at a review he asked if I'd considered stopping as it's been a long time - er no, because it works and if I stop the condition will return...
My MMH results in April were
TSH .75 (0.27-4.2) 11.7%
FT4 16.4 (12-22) 44%
FT3 3.5 (3.1-6.8) 10.8%
And the FT4 he referred to back from December was 12 so had he considered these new results he'd probs have been even more convinced they're in range so fine.
I have the name of a good endo i could see privately, I'm not up for the fight of trying to get a referral but I might just make a private appt for an expert opinion if nothing else.
Although DippyDame addressed this, I'm still most baffled as to why i had no symptoms before original blood tests in September 2023 and on 50mcg Levo for four months and now 75mcg for 3 months I feel the same. To me maybe it's worth seeing an endo to get that question answered!
This endo may want a letter from your doctor - this happened to me - no idea of the content within the letter back in 2016 : but later told the endo was an idiot and only go his job ( Head of Endocrinology and only private endo in my county ) as he had been there the longest -
sour grapes maybe - I don't know - but I chose to walk away from both and self medicate.
You probably haven't felt any different as you haven't been on a high enough dose -
or once on a high enough dose for a couple of months if ' nothing happens ' and your T3 doesn't increase to a decent reading at around 60/70% through the range -
and your conversion ratio does not fall back down to under 4 -
this tells me you are still struggling to metabolise and a different treatment option of thyroid hormone treatment the next logical step.
No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
Well - I guess you can ask your doctor to refer you in that case -
It doesn't guarantee anything and in my case simply made me more aware of the system heavily weighted against the patient getting any better - though much poorer -
and my doctor would not follow the advice the endo suggested - it was a shambles - my health secondary to their internal politics.
I guess my question is - Is this endo recommended and worth the hassle/ money ?
To me maybe it's worth seeing an endo to get that question answered!
Well, it would be IF the endo were capable of answering it. But most aren't. Despite their title, most endos are not hormone specialists, they are diabetes specialists - i.e. they possibly know a bit about insulin - but are mostly cluless about all the other hormones. And, worst than that, they have some very peculiar ideas about thyroid and often make things worse rather than better.
a) I had no symptoms when hashi's was picked up but TSH of 22 and T4 of 8. My figures are now all back in normal range but surely I should have felt some difference in my health and wellbeing after 7 months on 50 then 75mcg of Levo??
I'm not sure I understand your question - and pretty certain an endo wouldn't. If you had no symptoms before diagnosis, how can they improve? You can't improve non-existant symptoms.
However, if you feel that your health and wellbeing need improvement, then it would sound as if you did/do have symptoms. So, why are you saying you didn't? I don't understand. What do you want levo to do for you?
Being back in the so-called 'normal' range means nothing. The ranges are too wide. So, it's where within the range that the result falls that is important, not just being in-range. And most hypos need the TSH quite low in-range, and the FT4/3 quite high. And you're unlikely to achieve that on just 75 mcg levo. It's not enough. Not enough to make you feel better and could even make you feel worse.
I don't get how taking a lifelong drug isn't having any noticeable effect
Well, for a start, it isn't a drug, and it doesn't behave like a drug. It's a hormone - the thyroid hormone T4. T4 is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3. And to achieve that conversion you have to take enough of it. And I really don't think you are taking enough of it to have any effect. It's actually far more complicated than taking a drug. And it's made more complicated by the fact that doctors don't understand it. They don't know what it does nor how it works. In fact, they have very little understanding of thyroid as a whole. Which is why we, the patients, have to learn as much as we can about our disease and advocate for ourselves.
As to the CFS 'diagnosis', that's just a medical get-out-of-jail-free card. In other words 'I haven't a clue what's wrong with you so I'm going to tell you you have CFS/fibro just to get rid of you and look like I'm doing something useful'. Of course you're tired, your hypo, it's 'normal' to be tired. So, that gives them the justification they need for that non-diagnosis.
Personally, I wouldn't go to that clinic - tell them you're too tired! The therapy they prescribe won't help you and may do more harm. But, that's up to you. But, if you do go to see an endo, chose your endo very carefully, because not all endos are created equally, and a bad endo is worse than non at all.
Haha yes my comment about having no symptoms does sound crazy! What I mean is that when it was first mentioned then yes I could say that I was getting fatter and generally more tired than my friends of same age and I pace my activities accordingly - I had assumed that was getting old post menopause but them telling me i was hypo gave me hope that I could get more energy if I was taking Levo. The first doc who ordered the test said after a month or two I would feel a pop of energy and would feel much better generally in myself. If they hadn't given me that hope I would have carried on slowing down and taken it as normal. It was the unfulfilled hope that gets me down!
The first doc who ordered the test said after a month or two I would feel a pop of energy and would feel much better generally in myself.
🤣 Oh, I know! They have no idea, have they! So naive! When I was first diagnosed, I was like you, no symptoms that I knew of (but then, I didn't know all the symptoms) except fatigue - which wasn't actually too bad - and weight gain (which is why my GP sent me to her in the first place, he thought she was a nutritionist! lol). And she told me that 'in two weeks you won't recognise yourself! it will be like night and day!' Well, in a way, she was right. I didn't recognise myself - I felt a thousand times worse! It was all night and no day. But, according to her, that was due to my 'negative attitude'.
Well, I suppose there are some people that do feel a bit better after two weeks, but by no means everybody. It depends on the person. And if you're not taking enough levo then you might not feel anything at all. 75 mcg is only a small dose, it wouldn't do much for the majority of people. So, you need to keep on getting increases until you do feel well.
The other alternative is to get hold of some Levo via self sourcing, you can ask members for a reputable source via private messaging. Its not illegal to buy medication for personal use.
Please double check with admin to make sure source is kosher and not a scam. Levo is cheap and readily available. Definitely cheaper than a private Endo. In all likelihood you just need more Levo at this point.
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But, if you do go to see an endo, chose your endo very carefully, because not all endos are created equally, and a bad endo is worse than non at all. 
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