As previously mentioned I am currently on 75mcg Levothyroxine (Teva brand) with Hashimotos. I am very careful with taking the Levo properly and in general live a pretty healthy lifestyle. For the last couple of months my symptoms have really ramped up, those being:
- joint & muscle pain (hands and wrists especially)
- extreme fatigue
- thinning hair
- peeling nails
- weight gain
- cold intolerance
My latest test results are attached - they would only test TSH and free T4. My test was at around 8.30am, before taking Levo or eating, but I forgot and had a coffee before.
I had a call to discuss with the GP this morning and explained the symptoms, told him about the NICE guidelines, said I would like to try to get my TSH level to around 1 or below and asked for a dosage increase to 100mcg Levo. He said….
”No.” He said my numbers were normal and they had never been around 1. I said yes and I have never felt 100% but felt better when the TSH was lower. He asked what else I thought might be causing the symptoms.
I said, I don’t think anything else is causing them and went through the guidelines again. He said he would contact an endocrine specialist via email and ask them what they thought and that I should hear back within a week or two and asked whether I thought that was reasonable.
I said I don’t feel well and would like to be on a path towards feeling better sooner than that and I strongly feel that my TSH should be lower and that would help the symptoms. He said he will contact the specialist and get back to me.
That was how it was left. How to I feel now? In addition to the other symptoms above I now feel dejected, hopeless and disempowered. 😔 I really do not know what to do other than to wait and see what the specialist says, which might be yes to the increase, but might also be no.
Was my request unreasonable? Should I just wait for a response from the specialist and hope for the best? Is the doctor right that I’m fine? Any advice would be much appreciated.
Thanks,
(Still) Lotsofthyroidquestions x
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Lotsothyroidqustions
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Have you had vitamin D, folate, ferritin and B12 levels tested recently
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What vitamin supplements are you currently taking
As you have Hashimoto’s have you had coeliac blood test done
Are you now on strictly gluten free diet and/or dairy free diet
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
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.
Making the seemingly reasonable assumption that Lotsothyroidqustions is prescribed a single 75 microgram tablet, changing brand is not possible.
It would be necessary to get the prescription re-written to 50 + 25 (or 3 * 25). Which, given current antagonism with GP is unlikely to be an attractive proposition.
However, I agree that Teva might not suit Lotsothyroidqustions.
That’s interesting, is the brand generally linked with the GP practice or the pharmacy? I had another brand to start but then they changed it to Teva without any explanation.
In general, it is a combination of the pharmacy and chance!
But in the specific case of 75 micrograms it is simply that the only such product licensed in the UK is Teva - so it depends on the prescription and how it is written.
Personally, I have requested my GP prescribe Aristo levothyroxine (also branded Vencamil) as it is free of lactose and mannitol but for my 25 microgram, I'll accept Wockhardt despite lactose - as there is no lactose-free product in the UK.
helvella's medicines documents (UK and Rest of the World) 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.
Thank you helvella ! Believe it or not, this evening I have received a text from the GO saying he has read through the NICE guidelines (after I quoted them to him this morning) and he agreed that my dose needed to be increased to 100mcg and I will be retested in 4-6 weeks. The 100mcg is Mercury Pharma brand so it will be interesting to see whether that makes a difference! I am really interested to have a look at your blog!
It is very disheartening when your GP is rigid in their beliefs and seems not to be listening to you. This is all too common with GPs and sometimes even Endo's and it really shouldn't be like this.
Being a hypo patient can often feel like you're hitting your head against a brick wall but you need to make a come back and not fall at the first hurdle.
There is some hope in that your GP is contacting an Endo for advice, and that may well go in your favour. If not then leave it a short time and try again with a different more helpful GP at the same practice. Keep asking and seeing different doctors until you get the right answer.
Thank you Jaydee1507 , the empathy and hope is much appreciated. It’s so nice to have a place where people understand. I will keep my fingers crossed that the endo will help but will keep trying if not x
Once on 100mcg there’s wide choice of brands of levothyroxine
If currently getting 75mcg tablet it will be Teva as Teva is only brand that makes 75mcg tablets
So if Teva is causing an issue ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
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,
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
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).
Thank you so much SlowDragon for all your help and the wealth of information, it is all so helpful! Believe it or not, this evening I have received a text from the GO saying he has read through the NICE guidelines (after I quoted them to him this morning) and he agreed that my dose needed to be increased to 100mcg and I will be retested in 4-6 weeks. The 100mcg is Mercury Pharma brand so it will be interesting to see whether that makes a difference!
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