Later today husband will be speaking to GP regarding latest TFTs which have been erratic this past 3 years. He’s not taking any thyroid replacement yet but I’m expecting - or should I say hoping - GP is going to prescribe something based on over range TSH, although I know they often wait for it to climb higher
It seems he’s converting reasonably well. My questions are:
Given that FT3 isn’t too bad should he just wait to see if ferritin improves and maybe helps nudge thyroid function
D3, folate and B12 are high in range but ferritin is only just about within range with the rest of his iron panel suggesting no farther capacity for supplementing. However, GP has asked him to continue with Thorne bisglycinate @ 50mcgs daily for the time being
TSH 7.19 (0.35 - 5.5)
FT4 13.9 (10.5 - 21) 31.73%
FT3 5.2 (3.5 - 6.5) 56.67%
So far, antibodies haven’t been tested. The above were carried out at 8.45am
I have asked husband to join the forum but I’m not holding my breath
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fT3 will usually be ok even when thyroid is failing , because TSH is high (it asks the thyroid to make as much T4 as possible AND it also asks thyroid to increase the ratio of T3 :T4 that it usually makes.. so that is why ft3 usually looks relatively good in early hypothyroidism)
It is clearly time they tested his thyroid antibodies to see if autoimmune hypo is the reason for this increasingly high TSH.
It is possible for them to prescribe levo once they have 2 over range TSH's... even if they are both still under 10.... and even if fT4 is still in range.... IF there are symptoms of hypothyroidism that are causing significant problems.
This is not dependant on having raised TPOab ,, but it obviously helps convince them it's not likely ot get better on it;s own .. so they are more likely to prescribe Levo with TSH under 10 if TPOab are positive .
i can see from older posts he has had a couple of TSH slightly over 5 in the last couple of years,, you said it's been erratic ... how ?.. has TSH gone back into range in between these tests ?
I can’t remember or find the older labs but they were up and down within the normal range, with it once being over range but only slightly. This latest one is more significantly raised
GP has just called and prescribed levo x 50/day asking him to repeat labs in 6 - 8 weeks, to include iron panel and for now to continue supplementing iron. He’lbe sure to ask it also includes antibodies as you suggested
I listened in on the call and asked for a lactose and mannitol free prescription but she unfortunately couldn’t tell us which those would be. She mentioned something about a green prescription and to ring around pharmacies asking. Do you happen to know the mannitol and lactose free brands?
Lactose and mannitol free brand would be Vencamil. GP can write it in the first line of the prescription to ensure he always gets that brand. It only comes in 100mcg dose size so he will have to get a pill cutter to cut it up. GP likely to need to rewrite prescription specifically.
Be sure he takes his Levo 4 hours away from iron. he could try taking his iron with some orange juice to help it absorb better.
When someone isn't on Levo its not possible to asses if they convert well as the mechanisms are different with natural hormone production. You will need to test his FT3 once he has begun treatment, and it will be better to assess that closer to when he is optimally replaced.
Your GP has done the right thing prescribing Levo now.
Exactly what were his vitamin results with ranges?
Aristo are producing a branded version so that prescribers can more readily prescribe it. Otherwise, I think they'd have been perfectly content to supply only one product.
As they are pretty new to the UK thyroid hormone market, I don't think they are planning on dropping anything. And they do exactly the same within Germany (but a different brand name - I'll not repeat it to try to avoid fostering further confusion).
All four (German and UK) products are listed in helvella's medicines documents (UK and Rest of the World) which can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
We called back to request the change of script and have received a text saying: done! I really can’t complain about our surgery, they’re sometimes incompetent but they always try to be helpful
Will reserve judgment then on whether or not he’s a good converter, until after his first test
4/02/23
Ferritin 23.4 (22 - 322) 0.47%
Serum iron 26.2 (11.6 - 31.3) 74.11%
Transferrin 2.67 (2.15 - 3.65) 34.67%
% Sat 43 (16 - 50)
Folate 8.34 (>4) replete >6.13
D3 97.5 (>50 adequate)
B12 wasn’t done for some reason but in recent years it’s been 70+% and once it was over range
He’s incredibly lucky to have me guide him, if only he knew the struggle he’d have without guidance but I’d be nothing without you and the many other knowledgeable contributors, so how lucky am I!
Hi Jaydee, are you able to further advise please? Have visited out local Lloyds and spoken over the phone to an independent and in both cases they say they don’t offer it and one saying GP has put info incorrectly. Unfortunately there was a language barrier in both cases and so I’m left unsure of the reason GP’s info wasn’t enough and also why there’s a problem getting it
At Lloyds they dispensed me something but when I opened the packet it was wrong
Its likely that his prescription says 50mcgs because that is what the dose is that he should take. vencamil/Aristo only comes in 100mcgs so you would just need to cut it in half to get that dose.
GPs also often dont understand the need for having the brand name in the first line of the prescription.
Were you asking for vencamil and did you ask if they have Aristo?
When it is prescribed as a specific branded product, I think it should be:
Vencamil 100microgram, 28 tablets
The problem comes from mixing generic prescribing by recommended International Non-proprietary Name (iRNN) [which is Levothyroxine sodium] with prescribing by brand.
Not entirely sure if they should put it as "Aristo Vencamil" or just "Vencamil".
But I am in no way trained or experienced in prescription writing!
My UK medicines document includes the PIP codes which just might help some pharmacies work out what they are doing.
No idea whether he’s lactose intolerant but requested lactose and mannitol free on my suggestion. He’s reluctant and in denial enough about being hypo without giving him an excuse to stop taking it should it give him problems. Want him to have the best possible chance of success with it because I’m anticipating that initially he might start feeling off on only 50mcg. He’s about 86kg so should in theory may end up on about 125mcg, possibly more, possibly less
It’s often said on here that 50 is a starter dose but is that irrespective of weight? Obviously it would be a bit reckless to prescribe 125 straight off the bat but I can foresee some niggles because despite labs he’s feeling fine, so I imagine introducing thyroid replacement will upset the applecart at first. Having said he’s feeling well, he’s quite tired but equally this could be caused by, or at least contributed to because of his very low ferritin
Last labs were 4/02/23, results in reply to Jaydee. He takes:
It’s often said on here that 50 is a starter dose but is that irrespective of weight?
Thank for the info on availability. On calling various pharmacies it became apparent that 50mcg isn’t available. Surprising that no one seems to stock lactose and mannitol free however, GP changed prescription to Vencamil 100mcg (or whatever the other name is) and is ok with him pill-cutting them
Ferritin is indeed extremely poor. We eat red meat often and liver weekly. Also lots of fruit, green veg, eggs. He also drinks acerola with iron capsules to aid absorption but none of this seems to helping much at the moment. May change to orange juice as suggested by Jaydee to see if this makes a difference. Perhaps it will improve if/when thyroid hormones rise because I don’t think it’s an absorption problem given that other nutrients are good
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