even after a year this is all new to me re learning. I have posted before but had challenges accessing my medical records due to my email account being hacked.
I am on 75mg of levothyroxine Mon to Fri and 50mg at the weekend. I was on 100mg post total thyroidectomy due to papillary cancer. I also had 2 parathyroids removed and 25 lymph nodes in my neck as the cancer had spread. My gp reduced, my dose and while I did initially resist on reflection I no longer have palpitations, sleep better and I am less sweaty. I have my first annual check up in September.
I feel generally ok, I recovered very well but a world of pills is new to me, I have always tried not to take any medication. I suffer with some sweating, my toe nails crack and break, I really struggle with cramps when exercising and my legs feel as though there is not enough power in my muscles when doing exercise or walking some distance.
I am 5ft 3inches and slightly overweight at 10st 4lbs ( I have worked really hard with a cancer nutrionalist to lose weight and have gone from nearly 12 stone since my op in May 2022)
I now have high cholesterol - I know there is an inter relationship with under active/no thyroid- and I am battling with my gp as I refuse to take statins.
I just wondered if someone could explain my results to me which embarrassingly I don’t really understand them.
They are morning tests taken at 8.30am. Medication was the previous morning at 7.30am.
I didn’t eat before and I don’t eat each day until at least an hour after taking my medication.
Serum free T4 level
Result
15.9 pmol/L
Serum TSH level
Result
0.62 mU/L
Serum vitamin B12
Result
253 ng/L
I apparently had thyroiditis as well as the cancer but that was only identified post thyroidectomy. Consequently I was unable to have RAL.
Any help interpreting would be greatly appreciated. I feel I now need to be the expert.
Kind regards.
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Didntexpectthis
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To interpret blood test results, one needs the range. Ranges vary from lab to lab, so we need those that came with your results - usually in brackets after the results.
This is especially true for the FT4. It could be mid-range on one range, or top of the range on another.
A TSH is always a TSH, and doesn't mean much anyway, once it gets below 1. Yours is pretty average, but it can't tell us anything about the Frees, so should not be used to dose by.
What is missing is the FT3, which is the most important number - which is probably why they rarely test it! But, it could be that your FT4 is good, but if you can't convert it to T3, then it's not going to help much. And we'll only know how well you convert if we test the FT4 at the same times as the FT3, and compare them.
Your vit B12 is much, much too low, even without a range. It should be at least over 550. Was the folate not tested? The two should go together.
OK, so your FT4 is very low. It should be more like 75%. That means that your FT3 is going to be low, and it's low FT3 that causes symptoms. High cholesterol is a symptom of low T3. So, you don't need statins, you need to raise your FT3 level.
Your folate is also low at 5.4. My personal opinion is that you should ask to be tested for Pernicious Anemia before starting any sort of supplementing.
Ferritin??? Is this Iron?
Not exactly. Ferritin is the protein that stores iron in the body. Iron and ferritin are two separate tests. But, your iron is very low at 9 umol/L (normal range: 9 - 30). Did your doctor not say anything about that? I would have thought you would need urgent treatment with iron that low. But, iron is complicated, and I don't know much about it. Hopefully someone else will come along that knows. Or else, post a new question asking just about that.
Vitamin D (Dr did say I needed a boost so recommended I buy some supplements)
Didn't he tell you what to buy and how much? That, too is complicated, and not my area of 'expertese'. But, you do need some quite high doses with that level.
So, that was when your stupid doctor reduced your dose because he was only looking at the TSH? And, now, you're under-medicated. There was absolutely no reason to reduce it. Your FT4 was well within the range.
Hi GG , regardless of what the bloods said , Didntexpectthis said "My gp reduced my dose and while I did initially resist on reflection I no longer have palpitations, sleep better and I am less sweaty."
So while there was no reason for reduction based on March bloods , ( Feb fT4 was a little bit over) ....the effect on symptoms following the dose reduction seems to indicate to me that a small reduction was the correct decision .
... but the reduction was probably larger than was needed ..... going down from 100mcg to 75mcg 5 days/ 50mcg 2 days, sounds too heavy handed to me. Trying 87.5mcg / day might have been a better idea initially.
Didntexpectthis .... Feb fT4 was a little bit over range ... was this the test that led to levo dose being reduced ? or was it reduced after March tests ? (or did they reduce to 75/day after Feb , and then drop two days to 50mcg after March blood test ?)
now fT4 is pretty low....also suggesting 87.5mcg/ day might have been a better idea .. so increasing it back up a little bit looks like a good idea .... perhaps to 75mcg / day for 6-8 weeks to see how that feels ... and possibly to 87.5mcg later if needed.
I find 25mcg adjustment is often more than is needed ... often a better idea to only adjust by 12.5mcg / day . this is enough to have an effect on symptoms for me , and is also enough to have an impact on bloods. without risking 'going to far in the other direction' .
ps Didntexpectthis .. you're not a fraud... you're just using your brain. and now't wrong with that .. and you do have to use your brain to make sure your thyroid treatment is optimal .. because the chances are your GP won't be using theirs much beyond "TSH" .. experience on here shows us that if you follow their instruction blindly you can quickly go from 'managing ok' to 'can't manage /retired',
Well, as the FT3 has not been tested, seems like the reduction in dose exchanged one set of symptoms for another. Could have been that the FT4 was too high, as not everyone tolerates high FT4, but the OP was a poor converter. And you know what the solution to that is. But, without an FT3 you just can't tell.
Besides, do you really think he reduced the dose because of her symptoms. I doubt it. That would be very undoctoris behaviour. He was only looking at the TSH, and that was what was stupid.
He reduced to 75 after Feb & then wanted to reduce to 50 after March. I resisted and he sought guidance from my consultant endocrinologist who suggested 75 M-F and 50 at the weekend. .
so slight reduction in feb was reasonable to suggest, based on slightly over range FT4, but there was no need to reduce it by as much as 25mcg . In my opinion he should have only reduced to something in the region of 87.5mcg/ day , or maybe 5 days 100mcg / 2 days 75mcg .
the reduction got fT4 in range , and so he should then have left it alone for a lot longer than month:
~ because GP's should know that TSH can take much longer than a month to come back up when it's been low .
~ and because in post cancer patients , TSH is supposed to be kept on the low side anyway , (to reduce stimulation to the thyroid which could encourage regrowth of any remaining cancer) They used to say TSH had to be 'supressed' ( too low to measure) for several years , but i think they have changed their mind about that recently and now say it doesn't need to be supressed in everyone for so long)
~ and because even if you were not a post cancer patient , there is very good evidence that a low but not supressed TSH between 0.04 and 0.4 has no increase long term risks over a TSH in range.
So there was no need whatsoever to suggest a further reduction so soon ...... and by another 25mcg? .... this person sounds very heavy handed .... I would try and find someone who understands the word 'subtle' to adjust your doses in future .
if you do have to stick with 'the heavy handed one' , then ask them to read this paper : academic.oup.com/jcem/artic... Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy
that post also contains lots of other useful links that will come in useful in future 'discussions' with doctors who are terrified by a slightly low TSH result.
thanks. I have always had low iron levels ( I have have 4 children) and have been tested previously for pernicious anemia that was 2006. I had very low B12 so had to have B12 injections. I don’t feel like I did then - I can only describe that I felt I was made of lead and looked grey. My GP at the time was really concerned thinking I was a vegan or had lived in a country for with poor access to food as I had a number of depletions including vitamin D.
I will take a list of questions for my annual check up with my endocrinologist, though she isn’t a particularly warm person to ask questions of & told me nutrionalists were unregulated & quacks. It is a waste of time with my GP as I don’t think he understands he was obsessed with TSH which I have to remind him he needs to view differently as it is managed differently to prevent cancer returning.
They should probably have continued with the B12 injections because your B12 has dropped again and is now dangerously low. It can cause irrepairable neurological damage. But, to doctors, it's just a vitamin! They have no idea. Well, if they won't give more injections, I would suggest you take a daily B complex, with methylcobalamin (B12) and methylfolate, and that will bring the folate up as well. At the same time, take a separate sublingual methylcobalamin 1000 mcg tablet, and retest in six weeks. You cannot leave it like that.
I have to admit that I don't have any faith in nutritionists, either. I've seen some really whacky ones! Same goes for dieticians. And, especially where thyroid and deficiencies are concerned. But, doctors know zero about nutrition, so I would trust their advice, either!
Are you still having b12 injections? Making sure that you know that if it is an absorption issue, they do not stop. What was the result of the PA test, simply making sure that you realize that the test is unfortunately fallible.
No and absorption wasn’t diagnosed as the issue then I was told. I had an endoscopy at the time. Was told I didn’t have PA or absorption issues. I felt better for years. They assumed I had had a virus which floored me, MS was also ruled out.
And what do you think? Do you think your b12 is low now due to a different issue? A la low stomach acid due to thyroid issues post-thyroidectomy?
I am now even more curious as I had two hospital stays with sepsis before my issue with vitamin b12 & vitamin d, so I am doing a hmmm. And you perfectly described the lack of power in my legs (with no atrophy to explain it on my end). And post -thyroidectomy as well.
Hope you figure everything out soon. All the best.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I am 5ft 3inches and slightly overweight at 10st 4lbs ( I have worked really hard with a cancer nutrionalist to lose weight and have gone from nearly 12 stone since my op in May 2022)
Well done on impressive weight loss, especially while on too low a dose levothyroxine
10stone = 63 kilo
Important that all four vitamins are at GOOD Levels in order to tolerate full dose levothyroxine
Iron and ferritin in particular need to be at good levels
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.
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.
just picked up new prescription from a new chemist (the last one didn’t order my prescription from the gp, I always ask 10 days in advance) and 50mg is now mercury pharma!
The pharmacist there is lovely (I went to the other one as they are open till 10pm 7 days a week) I have got some vitamin D supplements and will go and discuss with her the other supplements in the replies. I need to get my head around all of the replies and understand what they all mean so will go in with my list next week. I could see lots of the things referred to in the
Re magnesium my nutrionalist recommended but I have been trying good old Epsom salt baths first but will look at that as well. I am post menopausal (58) and think symptoms I put down to the menopause were actually thyroid related - I just kept putting weight on and nothing I did worked.
I am not struggling like some on here so feel a bit of a fraud but was to optimise my health as much as possible as I have a full on career I don’t want to retire from for a few more years.
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
thanks it is a minefield. Quite embarrassed I blindly followed health advisors advice till I found this group. I think it is because I haven’t had any debilitating symptoms & I feel significantly better than before my op ( than for the few years preceding). I wasn’t aware I had thyroiditis and assume that may have impacted on my health previously.
Even when I found a lump in my neck my GP only referred me for an ultra sound as I said my mum had had to have her thyroid ablated as she had had an overactive one. It took 4 months to get an ultrasound appointment, this was the winter of 2021 so tail end of covid restrictions.
I can’t give you much technical advice but you may find some information if you also join the Thyroid UK FB group. And you can write to Thyroid UK (the charity) for their information pack (which costs I’m afraid but is worth it) which has lots of useful stuff about T3/T4 etc and what it means. Hope this helps. 😊
We very rarely see mention of the facebook group. Quite a number of the most experienced members here have expressed that they have no intention of ever joining facebook - so they remain here.
(That is also my attitude to a facebook. But the comment is not about me.)
I'm not aware of any advantages to joining the facebook group?
Thyroid UK do themselves post here reasonably frequently.
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