I recently had a private test and posted results on the forum ( the previous folate and ferritin were haemolysed)
I saw my GP who sent me for blood tests TSH only no T3orT4 as usual
Results
TSH 1.66 mIU/l (range 0.27-4.2)
B12 498ng/l (range 180-650)
Folate 3.8ug/l (range 2.8-15)
Ferritin 221ug/l (range13-150)
I currently take Levothyroxine 75mcg Monday to Saturday 100mcg Sunday.
I asked if I could increase the thyroxine and she said ‘ I can’t increase thyroxine as the thyroid/medication isn’t the problem, the blood results are all ok you’ve got fibromyalgia’
She then said she’d do a referral for physio told me to restart the gabapentin for my back pain and read about fibromyalgia and also consider duloxetine which she could start me on when I go back/phone her in 4 weeks.
I’ve joined the fibromyalgia forum on here and they’ve been very helpful, one member did think I’m under medicated for the thyroid.
Maybe I have got fibromyalgia but I also think I’m under medicated and don’t know what I should do now as gp won’t increase my thyroxine.
My folate is low but she didn’t comment on that or the high ferritin.
I’ve started taking vitamin B complex as was advised in my previous post.
Any advice would be appreciated.
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Eladee
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there is no reason why she could not TRY increasing your levo to see if it helped your symptoms , ~ ask her to read these references . ( some taken directly from GP 'update' sources, one written for GP's by NHS Specialist Registrars in Cardiology and Endocrinology)
all recommend keeping TSH between about 0.4 /0.5 and 2/ 2.5 in patients on levo,
She does NOT know that an increase in levo to eg 100mcg / day would lower your TSH below 0.4 unless she tries it ..and she does NOT know that an increase in dose would not improve how you feel unless you tried it .....so ask her for a reason why she is unwilling to at least try it for 4-6 months to see how it goes before blaming all your remaining symptoms of 'fibromyalgia' (which effectively means 'you have a bunch of symptoms we don't know how to treat and can't offer you much for ' )
Ask why she is more willing to prescribe antidepressants and painkeilers, which have plenty of known issues/ side effects of their own to cause concern ,, antidepressants are hard to come off once started, and GP's do now know this .
It’s all so frustrating, my gp said she wouldn’t increase my thyroxine because of the risk of atrial fibrillation and other heart conditions. I asked for a trial but she wouldn’t consider it meanwhile I’ll continue feeling rubbish with a diagnosis of something which I possibly don’t have 😠
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
There is some concern that administering thyroxine in a dose which suppresses serum TSH may provoke significant cardiovascular problems, including abnormal ventricular diastolic relaxation, a reduced exercise capacity, an increase in mean basal heart rate, and atrial premature contractions.12 Apart from an increase in left ventricular mass index within the normal range, these observations have not been verified.13 Moreover, there is no evidence, despite the findings of the Framingham study, that a suppressed serum TSH concentration in a patient taking thyroxine in whom serum T3 is unequivocally normal is a risk factor for atrial fibrillation.
In summary, patients on long-term T4 with either an increased serum TSH (>4 mU/liter) or a suppressed TSH (<0.03 mU/liter) have an increased risk of cardiovascular disease, dysrhythmias, and fractures when compared with patients with a TSH within the laboratory reference range. Patients with a low, but not suppressed, TSH (0.04–0.4 mU/liter) had no increased risk of these outcomes in this study.
Atrial fibrillation can occur with low Ft3 or low Ft4
i can see why GP 's are going to be very reluctant to increase in your case ~ 4 yrs ago when GP increased from 75mcg / day to 75 mon-sat / 100 sun ~ your TSH fell from about 2 to about 0.3 (just within range) and that was a very tiny dose increase of just 3.5mcg / day
So they will be assuming increasing by another tiny amount to 2 days 100mcg would do the same again ~ plus you already had fractures and they are already treating you for osteopenia ~ you ring all the bells that alarm them about over treatment .
You could try pointing out that your TSH has now risen again , ... but honestly I think you're probably flogging a dead horse trying to get an NHS GP to increase your Levo prescription...
have you ever asked to be referred to an endo ? ( with a view to a trial of combination therapy) ?
if you have and they said no ...
have you ever increased Levo dose yourself for a few months to see it it does actually make you feel any better ?
Hi Tattybogle I’m sorry I only just saw your reply, you’re right about my TSH it did drop quite significantly with the 25mcg increase I can’t remember anything of conversation with the gp about it as it was a while back, perhaps I would benefit from the combination therapy as I don’t think I’m a good converter but I don’t think for 1 minute she would refer me to an endocrinologist as she’s saying it’s fibromyalgia and thyroid is fine so I would probably have to go private then would they be wanting a gp referral or could I take my blood results and Graves /rai details?
I’m going to follow SlowDragon’s advice to get vitamin levels improved, particularly the folate this may improve the conversion.
I haven’t increased my dose without gp telling me to but maybe I could try the extra 25 on a Friday or Saturday and see how that goes, I don’t think it would suppress the TSH to undetectable levels and I might feel some benefit along with the improved vitamin levels. I could do a private test to check the thyroid levels in a couple of months to see where I’m at.
I got the fibro diagnosis by two physicians. Turns out my T3 was too low on Levothyroxine. It was the physical therapist who suggested it was probably an issue with my thyroid hormone because the physical therapy didn't resolve my symptoms. With a TSH of 1.6 I would not be adequately treated for hypothyroidism.
Many years ago when I was wondering what the heck was wrong with me (doctors unable to help) I worked out that I had fibromyalgia. At least I was pretty sure that was what they would tell me if I suggested it myself. It’s a useless diagnosis because there is nothing they can do to ‘cure’ it. In fact it’s a diagnosis you are better off without. It’s a catch all diagnosis that allows them to do pretty well nothing to help but supply useless drug regimes. Many on the forum report similar and the best way it would appear, is to get your thyroid medication balanced. I am hopefully in the process right now. Try not to waste any more of your time with these useless diagnoses. Either find a medic (very difficult in my experience) who knows what they are doing or get full blood tests and get further advice from the experienced people on the forum.
Thanks, it’s so difficult when they won’t even consider it could be my thyroid medication and not prepared to increase for fear of causing heart problems. I’ve already seen 2 other gp’s at the surgery and they’re of the same opinion my thyroid medication is not an issue 😣
I do have heart problems. I calculate that I have been undiagnosed for at least 45 years. It’s only since starting levo that my heart improved. Silence from the medics on that one! I am now trying T3 ‘to get a life’. Hypothyroidism is not understood by medics generally. Honestly get proper private blood tests and then your advice on here can be better tailored to your needs.
Hello SlowDragon thanks for your reply and information I just weighed in at 69.8 kg, I’m taking igennus super B complex 1 daily since last week but have just read the bottle and serving is 1 tablet 2 x daily so I need to increase it, I’ll need to buy some more soon as this was partly used then I stopped taking them I think I need to get a pill organiser as I forget 😣
I’m lucky if I get the same brand of Levothyroxine each prescription, I’ve ordered some more today and have included the 100mcg even though I’ve got some from my last order as I only take 1 a week. I live in Dudley just south of Birmingham.
I’ll email thyroid Uk for the list. I was thinking if I try to get on top of the vitamins then get another private test in6 weeks or so we can see if my T3 has increased, I’ve got to call gp in 4 weeks to see how I’m going being back on the gabapentin (which was initially prescribed for my back problems but gp reckons it will help with fibromyalgia ) with a view to her starting me on duloxetine which i definitely don’t want so I could try and press her again to just let me try an increase in dose.
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.
Thank you for all your help I’ll try and see an endocrinologist privately as I don’t think I’ll get anywhere with my gp, although she’s very supportive of the fibromyalgia diagnosis 😣
I was diagnosed with fibromyalgia by my GP. She sent me to a rheumatologist who said I was undermedicated and hypothyroid (similar TSH as yours). He wrote down a whole list of hypo symptoms he found (swollen eye lids, thick skin on inside of hands, slow reflexes etc.) in his report to the GP and sent me to a good endo (who, unfortunately, closed her practice shortly after she became my endo). She put me on a higher dose, which resolved my "fibro" until the next doctor lowered my meds again.
I can look at the bright side of all that most times now, Charlie-Farley. For decades there was never even the slightest doubt ever in my mind that "doctor knows best". Doc said it, I did it. Even when they did me harm, I defended them. I now look at it akin to having left an abusive relationship. I listen to the doctor but I double check everything if at all possible. I hope I have also learned to not fall for the different tactics they use to force me into submission. And I found THIS wonderful group and other supports in the process. So it's not all bad. In fact lately it has been pretty good. I very much appreciate your empathy, though. Thank you.
I've lost count of how many people I know ( myself included) who've been given the fibromyalgia label . Do they think it's going to make you shut up and go away? It makes me so angry they'd rather do that , dish out antidepressants, painkillers etc etc than explore further the possibilities. Guidelines are exactly that ,- guidelines, and we're all individual. You need to do what you think feels right going forward in order to get your health back . I'd be tempted to calmly say that I've decided ( armed with some info others have kindly provided) to raise my thyroid medication and I'd like your support whilst I do this before I embark on fibromyalgia medication that will just mask symptoms. I agree with tattybogle, there's no reason why you shouldn't have the right to at least TRY!! Good luck.
Thanks it’s a nightmare just trying to get yourself well and being ‘diagnosed’ with something which may or may not be correct why not just increase my dose to see how I go, I’m fed up of feeling crap!
Very well said, AmandaQ. Doctors have become a pharmaceutical outlet. There rarely is an effort (or the time) for digging deeper. All they do is taking a somewhat educated guess as to what drug best matches a symptom. And if they come up short on what it could be that ales you, they revert to something more "generic" like depression or fibro, where there is no tests to conclusively proof that it is the right diagnosis. And, never mind, working on prevention. Wait till the patient is in a state that can be "fixed" by a drug. Job done!
Do you not have enough overlap in prescriptions to allow you to do a slight dose increase to see how you get on?? 😉 Sometimes you just have to do what is right for you ... not them 🤗
I don’t know how the medical system works where you’re at but here in the US if I’m having a problem with a doctor I find a new one. I had to do that in 2021. After being in the emergency room in September of 2021 with extreme pain in my upper abdomen through to my back I was told by the ER doctor to follow up with my primary care doctor. I tried and tried to get in to see my primary care doctor but they kept telling me they didn’t have any appointments available until March of 2022. I had already been in the ER in August of 2021 also with extreme abdominal pain and tried to followup with my primary care doctor with no luck. They told me if the pain got worse to go to the ER. So when it happened again in September of 2021 I decided to find another doctor. After finding another doctor and then being referred to a gastroenterologist and having blood work, CT Scan, MRI and a stool test done I was diagnosed with chronic pancreatitis, pancreatitis, insufficiency, and pancreatitis atrophy. If there’s anyway you can change your family doctor that’s what I would do. I wish you good health!
Hi yes that is an option but it’s hard to find a GP who isn’t if the same opinion as I’ve had 3 different ones and they all only test TSH it’s a bit of nightmare to be honest. But I’ve got a lot of information from this forum that I can print off and ask my gp to reconsider increasing my thyroxine, the alternative is to see an endocrinologist privately hoping they’ll see me with my blood reports without needing a gp referral.
I’m sorry to read you had such a terrible experience hope you’re sorted now after getting the right treatment and feeling much better 🙏🏻
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I very much appreciate your empathy, though. Thank you. 
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