I was here recently as my GP won't increase my Levo from 50mcg after over four months, and I've got the following symptoms:
Cold and shivery most of the time (and freezing extremities)
Pins and needles in the soles of my feet and numbness in my hands
Stiff finger joints, especially in the mornings
Headaches
Dizzy spells
Forgetfulness and severe brain fog - it's getting embarrassing
Feeling exhausted
Feeling shaky and jittery in the mornings, heart pounding sometimes at night (Hashis swings?)
Piling on weight - I'm heading towards being overweight despite low sugar, low carb, no processed foods, no caffeine or alcohol, gluten and dairy free diet
I have never experienced the peripheral neuropathy or stiff fingers prior to starting on Levo in January. My GP refuses to acknowledge a thyroid or B12 link (the latter with a history of poor absorption), has ruled out possible diabetes and has referred me to a neurologist.
So, here they are (I've been supplementing heavily with B12 since my last tests so hopefully that explains it being so high):
CRP HS 0.91 (0-5) January 2019 0.74
Ferritin 44.2 (13-150) 16.7
Folate - serum 14.61(3.89-19.45) 4.4
Vitamin B12 - active 300 (37.5-188) 83.2
Vitamin D 54.4 (50-175) 54.7
TSH 1.41 (0.27-4.2) 5.85
Free T3 4.58 (3.1-6.8) 3.9
Free thyroxine 17.2 (12-22) 12.1
Thyroglubulin antibodies 376 (0-115) 383
Thyroid perioxidase antibodies 14 (0-34) 14.3
My results from January are after the ranges in brackets. I supplement with sublingual D3 and K2 and have upped my iron (Solgar Gentle Iron with a vitamin C supplement, and gluten free black pudding!), and also methylfolate 400mcg daily. Vitamin D isn't great at all so any suggestions for upping that without the input of a belligerent GP would be great.
Any clues regarding the stiff joints and tingling/numbness would be hugely appreciated! I'm very anxious at the prospect of seeing the neurologist.
Your high TG antibodies are most likely due to Hashimoto's, but NHS very reluctant to diagnose autoimmune thyroid disease (Hashimoto's) on just high. TG antibodies
TSH obviously improved, but frequently on Levothyroxine we under TSH well under 1
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
you are likely to need dose increase. See if you can negotiate small dose increase to 50mcg/75mcg alternate days
Vitamin D is too low.
GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
I do take a Solgar B vits complex daily but also a sublingual 'melt' and the BetterYou spray, so can definitely cut back. I use the BetterYou vitamin D with K2 spray but maybe need to use more of it. I take magnesium citrate every evening also, along with zinc.
There's no way my GP will read anything I take in. I tried a different (female) doctor last time, but she came back at me with something she'd read recently in the BMJ. They really don't like my getting private tests (Medichecks) or suggesting they consider a different approach.
I'm seriously thinking about trying NDT. The thought is quite daunting but I know that it used to be prescribed for thyroid before Levo became the drug of choice for the NHS. And the fact that my TSH has dropped means my doctor is even less likely to up my Levo. There's no taking my symptoms into account whatsoever, some of which are just awful. I don't know how I'm managing to get through the day sometimes, with a young child, my partner being out at work full time, working myself part time and running a small business alongside that, and no family support within 450 miles...
Would trying NDT be a bad move? I rely completely on this forum for support and advice I trust. My GP is extremely unhelpful and just going to the surgery now fills me with dread.
have you got the list of recommended thyroid specialists from Dionne?
please email Dionne at
tukadmin@thyroiduk.org
Is there an NHS or private one near you?
Ideally one that sees private and NHS patients is best option. See privately to start with and then get transferred to NHS
Roughly where in the UK are you?
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Hi, there's one in Edinburgh which is a six hour drive from here (we're in the Hebrides). So even if she takes NHS patients I wouldn't fall within her area. The nearest city is Inverness (still 2.5-3 hours away) and there's no private option there.
If I'd have known this would happen when we relocated 18 months ago we would have moved to the Borders instead!
Thank you. I'm considering seeing the Edinburgh consultant anyway to see if she could help at all. It would mean a weekend away and a lot of money but I'm feeling desperate!
Good news about T3 if I could ever get it prescribed...
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