Been waiting 5 months for a phone appt since getting a letter from my Endo asking me for bloods (Aug last year). I’ve been keen to speak to them as I’ve been feeling rubbish for most of last year.
Had a TSH of 5.34 which is massively up for me - usually 1.x, even though I’ve been on lio and Levo for years.
I tried titrating up on my own as I couldn’t speak to him but ended up getting regular migraines, so stopped experimenting.
Just had a frustrating 10 min call now where he wasn’t bothered by the raised TSH at all. “We don’t medicate until it’s 10 or over” he said. But I’m already on meds - and the TSH is climbing. Without him being bothered.
He said he’d put me on a 6 month review rather than ‘annual’ (12months plus in reality), so maybe get an answer then.
Does anyone have any clue what’s happened with my TSH as the Endo was not forthcoming despite me asking a few times?
I’m middle aged and post menopausal.
Thank you to anyone who replies.
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TumericGold
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You really need to get a full thyroid blood test run with TSH, FT4 & FT3 plus all your key vitamins ferritin, folate, B12 & D3 to see where you're at.
Just a TSH is completely inadequate although it does show us you are currently hypothyroid and in need of more thyroid hormone.
Multivitamins are never recommended here as they usually contain inactive vitamins of too lower amount to help a deficiency. They usually also contain iodine which isn't recommended either plus more reasons.
The B50 complex I found had inactive vitamins like folic acid. Better to take the active form - methylfolate.
You can ask your GP for the vitamin tests or private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
I see you also take iron sometimes. Are you always sure to tak that 4 hours away from Levo or T3? It can affect their absorption.
Most blood test companies offer finger prick tests which you can do at home although do be sure to follow instructions carefully about drinking lote of water beforehand, light exercise and massaging arm.
Get the blood tests run and we can help you further but its likely that you are hypo which is why you are gettin the migraines and simply need more thyroid hormone.
Ah! Better have a look at the NICE guidelines ☺️. Will organise a private test and go from there.
When you have a test privately, are GPs and consultants obliged to respond to it in the same way as an NHS test? Just a little woolly on the protocols.
Some accept them others not! Monitor My Health is an NHS lab which ought to get over that silly argument (10% off with THYROIDUK10)
They are very woolly on this too and often ignore private results only to run their own when they realize you are a little more knowledgeable than the usual thyroid patient!
Honestly if I could explain the protocol I would but they all vary... most of them are not very up on thyroid treatment 😕
They say they don't acknowledge them but when I first saw the NHS Endo with full results and a DIO2 result she mumbled and then acknowledged T3 would be needed 🙃
My GP refused to enter my Monitor my Health thyroid test results despite it being a NHS Lab.... Because I paid for them!! Give me strength!At the same time my GP can't request the full thyroid panel on the NHS.... The electronic form gives them TSH only box to tick. They're not allowed to request full thyroid panel.
Sorry don't really understand what you are saying? Vits and minerals are a separate thing.I'm referring to thyroid Hormone levels.... My GP says they are not able to ask for Ft4 & Ft3 to be tested, just TSH. So I tested them privately from a company that is a NHS Lab but GP won't enter the thyroid results despite it being a NHS Lab... Because I paid for them to be done!! I keep my own copy of my results.
What I meant was if your GP won’t acknowledge the privately paid for test (and presumably won’t help you adjust meds in light of it) you can use the paid test to guide self manage the things you can control with your thyroid (such as supplements, diet etc). That it’s not a complete waste of money but obv not the outcome you wanted.
Ah I see. It's my Endocrinologist who decides on my thyroid hormone replacement dose.... He's happy to accept my private test....because I pay him, though he's also a NHS Endo. He then advises my GP. It's all a bit bonkers tbh....!! I just find it really annoying that because of beurocracy there isn't a record of my thyroid blood tests on my NHS file..... unless my Endos letter contains them. And then that's OK....!!Words fail me on the nonsense of the NHS these days. 🙄
My surgery is the same, I'm half way between two hospitals but in two different trusts luckily I've an endo(1st time20+years) telephone appointment at my preferred choice but neither do full panel I've to pay for my own & Dr not happy with it🤦 madness!
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thank you for the welcome and all the info, SlowDragon; much appreciated.
It’s NHS. I will get a private test done, can’t go through another 6 months of this.
I take 20mcg lio (usually Morningside, sometimes Teva), 50mg Levo (99% usually Teva).
I take Solgar multi vits (currently V2000) plus H&B or internet B12 (100mcg always methylcobalamin), D3 25-50mcg. I’m vegan so sometimes take gentle iron as well as magnesium citrate min 400 mg &/or a Vit B 50 complex.
When I’ve had my B12 included at GP’s it’s never come up low or needing attention, but will get a private test panel done.
Been “hypo” since 1991, never been told what type, but placed on Lio/T3 in 2004. Had all the procurement hassles and eventually fought to get NHS to cover it again.
Suspect it may be autoimmune as I also got diagnosed with Hypermobile Ehlers Danlos Syndrome recently last year after lots of joint pain and fatigue issues.
Has also been a stressful two-three years as was a family carer. Mentioned as I note stress can be a cause in raised TSH.
Ah, I don’t get the choice about brand of meds, it’s down to the pharmacy 😔.
The Endo yesterday talked about upping Levo but while I’ve tried, it seems to give me migraines when I increase…?
I do take B12 supplements everyday as I’m aware of the risks, been a veggie all my adult life, and vegan for a decade 😊. Think I should sort my occasional love-hate relationship with wheat though and let go for good.
Ah. I tend to go to the same one as they are the only one in the area that can order in T3. They usually give me Morningside but sometimes due to their own supply chain problems I end up with Teva instead.
hi Turmeric. You’ve had plenty of good advice re medication here but just wanted to chip in re your hypermobility. I have this (not diagnosed with Ehlers though) and I have found movement such as yoga and doing light weights so beneficial for my physical and mental health.
You might be doing this already but wanted to share as something I’ve found helpful. There’s so much interesting stuff emerging about hypermobility and mental health. Strengthening and releasing in a careful way is key. Take care and welcome to the forum.
Thank you Janeroar, that’s kind of you to mention that. I do a bit of yoga - sporadically - but could do with making it more regular as well as the light weights (have some, used for physio exercises) .
Am just readjusting lifestyle while some long term commitments change, but would like to definitely work those in.
The hypermobile element in MH sounds interesting, will have a search. And your advice about strengthening and releasing hits home too; have a hand contracture which led to other problems so learning to be more careful. Thanks again 🙏❤️
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