Hi I’m hoping the very knowledgeable people on this site maybe able to help me
I’m 59 year old female diagnosed over 20 years ago with hypothyroidism and have been taking 150mcg Levo since
2 years ago blood tests showed B12 low and had symptoms consistent with deficiency and have very successfully self treated this with gp support but self injecting
Recently I have been suffering with a number of symptoms most significantly , tinittus , feeling very hot all the time with hot flushes on top of this , palpitations and anxiety
I’m pretty sure it’s not B12d
I’ve recently had 2 blood tests 2 weeks apart
Firstly with gp
TSH 0.3 (0.2-5.5)
So initially thought too much thyroxine ( I have been playing around with time of day etc)
Then 2 weeks later bloods by blue horizon
TSH 2.70 (0.27-4.20)
T3 4.70 (3.1-6.8)
T4 total 102 (66-181)
Free t4 29.4 (12-22)
I’m getting into a muddle I had not change my dose in between gp blood test and blue horizon test
But did stop a 3 days of thyroxine before blue horizon results came through as I was so sure I was too high
So I can’t explain the difference in results
The only other thing on blue horizon results was ferritin 163 (13-150)
Vitamin D 53 (30-50 insufficient)
I have one main question how long does it take for a change of dose to affect symptoms? Stopping Levo seemed to have immediate benefit but then it all started again
Also would very much appreciate any feedback on my blood results
I’ve had great support from the P.A. site but I do think my symptoms are thyroid Thank you so much for your help
It’s so stressful and frustrating trying to sort these horrible symptoms out on your own
My GP is very nice but hasn’t a clue about B12d or thyroid I’m seeing her on Monday but feel I need to be prepared to tell her what to do!
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clairemallen123
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I do also for years have a feeling every now and again like I’m getting a cold slight ear ache a bit throaty post nasal drip and then it goes away again
Does this mean I just have to put up with it if I do get a a surge ?
As well as B12,injections do you supplement a good quality daily vitamin B complex? one with folate in not folic acid may be beneficial. B vitamins best taken in the morning after breakfast
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Vitamin D is too low. Do you supplement? Aiming to improve to at least 80nmol and around 100nmol may be better .
Vitamin D mouth spray by Better You is good as avoids poor gut function.
Suggest you supplement 1000iu for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Government recommends everyone supplement October to April
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Despite high FT4 your FT3 is pretty low. Like many with Hashimoto's you may be poor converter. Getting all vitamin levels optimal is first step.
Then trying strictly gluten free diet
Retesting full Thyroid after 2-3 months gluten free. If FT3 remains low then look at seeing a T3 friendly endocrinologist for prescription for small dose of T3 in addition to Levothyroxine
Getting DIO2 gene test can help getting T3 on NHS, if you test positive
You only had the TSH tested by your doctor, didn't you? So, it's the difference in the TSH that you're questioning? Were both blood draws done at the same time of day? TSH is highest early in the morning, and drops throughout the day.
If you stopped your levo 3 days before the BH test, then your true level would be a lot higher than that! RFU suggests it was a Hashi's 'hyper' swing. But, if that had been the case, your FT3 would have been high, too. And, in truth, it's not even mid-range. So, I would imagine you were taking much to much levo - how much were you taking? - and not converting very well. The high TSH is probably due to your low FT3.
It can take at least a week to feel any difference after a dose change. When increasing, it takes that much time for your body to start absorbing and converting it. And, when decreasing, T4 has a half life of about 7 days. So, 7 days after decreasing you would have only half of the amount you decreased left in your blood.
Having said that, it is a well-known phenomena that when people stop levo completely (and, from experience, I can say it's the same with T3, too) they suddenly very well and symptoms disappear. This leads lots of people to believe they didn't need it in the first place, but the feeling of well-being doesn't last. Sooner or later the hypo symptoms start creeping back in.
Yes only Tsh done by GP it was done at 11.30am and I didn’t take my dose of Levo that morning
Blue horizon done at 10am
I didn’t stop other than not taking the morning of blood test until after both lots of blood were taken
I did think it was too much Levo
I normally take 150mcg and have for years I was beginning to feel tired and took one dose of 175mcg but also tried taking in the morning rather than evening and making sure on an empty stomach then pow felt like I was cooking from the inside with rushes of even hotter lots of sweating and palpitations but don’t think pulse felt very fast
Also slowdragon my folate was
33.2 (range 8.83-60.8) despite taking folate 400 daily do you think with these results I should increase folate to 1000 for a while
I have also just started vitamin d as blood test show 53 (range 30-50 insufficient)
Both grey goose and slowdragon should I take my Levo dose 150mcg again or continue to withhold it for a while or take 125mcg??
I might also add I’ve suffered with swollen tongue metallic taste and tinnitus recently
The tongue and taste issues have gone but tinnitus still present
I am also a little worried my ferritin is 163 (range 13-150)
Thank goodness there are people like you out there that understand
I am struggling because I think I was doing OK on Levo
Then 2 years ago The B12d caused a problem but once I had sorted that I’ve been flying until this recent episode so I can’t understand why my thyroid is suddenly an issue
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