Because I've gone downhill in the last few days I called again to speak to someone, this is after my sending in a letter last week with bloods and being ignored (fobbed off, dismissed).
Now I'm hot and cold sweats, low level tingling, dry tongue (electrolyte ususally help but not now) unsteady like on rolling ship, pressure in head.
All of this had been coming and going but the sweats are new plus a bit nauseous.
GP will ring to discuss, and I'd like to ask again for thyroid dose increase and B12 further investigation. I have my letter in front of me but no references to NICE or somewhere. hard to think straight on the phone.
Can someone post a relevant helpful link to persuade gp? I keep seeing them and can;t find now.
Thanks very much.
PS I'm going to ask if I'm on too much HRT, at 200mcg, can this happen?
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Thank you SlowDragon. If they talk about my TSH being 'fine' what can I counter with quickly? My brain feels slow. The Dr Toft article is what I'm going with from tattybogle's list.
Also I realise now that I have lowish TSH, and low T4 despite 75mcg of levo. Does this tell you what is happening, has it got a name such as central hypothyroidsim etc.? Thanks.
My GP insisted TSH 4 + was lowish, obviously there was a lot of room in the range.
Central hypo as I understand it is where the pituitary doesn't respond adequately to low T4 levels so doesn't raise TSH high enough, leaving a mismatch between TSH status and T4 levels. The treatment is the same as far as I understand. Levothyroxine.
I hope someone better informed comes. There's also NICE about dosing amount of Levo by kilogram weight of person.
He hadn't read the letter I sent in last week, was going through it on the phone.
I didn't make it to the thyroid part as we got stuck on B12 and Iron. He repeated three times my blood results are normal. I could tell he wasn't listening as he started reassuring me about iron deficiency. Which wasn't my question as I was wondering about heading for iron overload!
I said B12 was at low end, he said 'but still normal', and I said 'but I've got symptoms. I don't know if it's B12 or something else, but I need to rule things out, because I'm unwell'.
Then he asked me to come in for a face to face on Friday. I felt I had to agree even though I'm sure he won't be willing to do the detective work necessary to actually help me get well.
As I don't want to be labelled non-compliant.
In the meantime I have to get some more information together and send it in.
But honestly...I don't hold out much hope.
'Lowish' - it's 1.78, I think I meant under two, so he might refuse levo increase on basis of not wanting to reduce it further.
It's going to be another doctor at the practice who helps, or end up going private which has its own issues.
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.
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
Thank you 😊. I was taking Yipmai Liposomal B Complex.
From amazon, seems unavailable for now and the link won't work.
500mcg methyl B12
400mcg methylfolate
I've tried to upload photo but it posts it elsewhere in the thread?!
BUT I didn't supplement while on holiday and haven't done so for a week since returning, so three weeks total without.
I've had suggestion by jade_s on PA not to restart b12 in case the gp decides to do further testing.
And re folate, I think I shouldn't restart that if I'm low in b12 ?
To do with nerve damage if I'm b12 deficient with neurological symptoms(and I haven't been able to rule that out yet).
Could the stopping of supplements have caused a worsening of symptoms? I hadn't noticed any improvement in symptoms while still on them, but was assuming that it was early days.
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GP in Bath (or Bristol or wider area) prescribing Armour please...
GP visit. Assistance please. She has agreed to raise my levo, but in a round about way.
Could I still be hypothyroid
