Hello everyone and THANK YOU ALL for your help and support here!
I would like to ask you for advice, as I am baffled…
Back in April, I was on 225mcg Levo, still feeling s*~t, depressed, fatigued, weight pilling on, and was due review at GP. I got a junior GP that refused point blank to accept my Medicheck results, just looked at tsh from NHS blood test and cut my dose to… 🥁 … 125mcg! I have been feeling even worse since! At review in June, another GP increased me to 150mcg and ASKED ME what I thought it could be done more to help.
Now, this is my thingy: my Medicheck results that I posted here, hint that I have Hashimoto and vit D insufficiency. I have been gluten free since March and taking vit D. I do not notice a difference in me - is that a “yet” coming here, do I need to give it longer? I am also suplementing with a Thyroid supplement from one of the shops in the ThyroidUk website ( includes B12, magnesium, selenium) I am going to have my bloods done soon. If GP decides NOT to increase because TSH is in range, how can I increase it myself without a prescription? What else can I try OR ask him to do as he seems open-ish? I cannot afford to “ditch” the NHS, budget to tight to test and go to private doctors …
If all the above doesn’t make sense, ignore me…
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SilviadeSousa
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Looking at your previous post, Vit D, ferritin and folate all needed improving and B12 could do with nudging up a bit. You need to know your current levels of these. Optimal levels are needed for thyroid hormone to work properly.
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Back in April, I was on 225mcg Levo, ..... I got a junior GP that refused point blank to accept my Medicheck results, just looked at tsh from NHS blood test and cut my dose to… 🥁 … 125mcg!
Well what a stupid doctor! That was a mega reduction. Dose changes should only be done 25mcg at a time. In future, if any doctor suggests more than this then remnd them we are using hormones here and dose adjustments should be done gradually. Refuse any dose changes more than 25mcg.
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Your Medichecks results didn't hint at Hashi's, they confirmed it with positive TPO antibodies. Apparently, it can take months for a gluten free diet to have any effect, although some people don't benefit at all. It's very individual.
What is the Thyroid supplement you are taking?
Are you taking enough selenium - 200mcg daily?
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I am going to have my bloods done soon. If GP decides NOT to increase because TSH is in range, how can I increase it myself without a prescription?
Don't worry about that for now. Get the tests done and post the results on here for guidance.
Thank you for your reply and I apologise for my lateness.
Yes, I was arguing with the doctor until I broke up crying - he was not budging - as now he had evidence I was Over Active. On the same breath, told me that weight loss is basically less in, more action...
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Again the 'hint' was what he said if he could accpet 'a prick your finger at home test'...
The supplements I'm taking are: Higher Nature's Thyroid Support formula (with iodine and selenium); Holland & Barrett's 5-HTP, Vit D3 (10mcg) and spirulina powder; supermarket Vit C.
It isn't 200mcg of selenium, no.
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Thank you!
I will do.
As soon as I have tests I will post them here. GP's just passes me TSH but I will get a Medichecks also.
What is this "evidence"? If you have a diagnosis of hypothyroidism - underactive thyroid - it's impossible to be overactive.
What are your latest results?
Not sure why you told him you did a fingerprick test. Why not just say a private blood test, no need for details, it gives them chance to find a way of ridiculing everything you say, keep it simple.
Higher Nature's Thyroid Support formula (with iodine and selenium);
Iodine is not recommended for Hypo patients and definitely not for Hashi's patients. Iodine used to be used to treat overactive thyroid, and iodine can trigger antibody activity. You would be best ditching this supplement.
Holland & Barrett's 5-HTP,
If you wish to continue with 5HTP, my suggestion would be to buy a decent brand when you've finished this one. H&B, high street and supermarket own brands are generally poor quality and tend to use the cheapest and least absorbable forms of active ingredients.
Vit D3 (10mcg)
What is your current Vit D level?
10mcg = 400iu and that amount wouldn't help a sunburnt flea. If your level is at the recommended 100-150nmol/L a maintenance dose for most people would be 1000iu, maybe 2000iu daily. I prefer my level at 150, I recently tested because I was experiencing bone pain in my leg and it had gone down to 106, I am now supplementing 5000iu daily because I know that's what I personally need to bring my level back up.
His evidence was (I do not understand his decision) Serum TSH 0.07 mU/L (0.27-4.20) and Serum free T4 22 pmol/L (11-22). In June it was TSH 1.3 mu/L (0.55-4.78) and no other tests.
It was naivety. He asked how was blodd drawn and I answered truthly. I have learnt.
Thank you for the tips on supplements.
I have not been tested recently to anything else.
I will be ordering a Medichecks Thyroid Check Ultra. I am due the NHS one at the end of September.
As soon as I have my results, I will post them for advice.
His evidence was (I do not understand his decision) Serum TSH 0.07 mU/L (0.27-4.20) and Serum free T4 22 pmol/L (11-22).
Ah OK, he is going by the fact that your TSH is below range. It's not "overactive" though, it's not even strictly "overmedicated" because your FT4 isn't above range.
If you don't have a recent Vit D test, then I would order the Medichecks Thyroid UltraVit which includes Vit D (Thyroid Ultra does not). If you order during September, there is 20% off using code MED99 for all tests not already on offer.
Gosh your doctors sound vile, in short don't ditch the NHS, ditch your current doctor and get one that understands and will help you, I've been on meds for over a year now and very slowly getting better - and yes it does take a very long time for all of the systems in your body to switch themselves back on and then start to run properly but for that process to even begin you need your meds to be in the optimal range, find another doctor and good luck
Thank you for your reply and I apologise for my lateness.
Unfortunately, I am being a yo-yo for 11 years now... I tried all the GPs on my surgery. I am now considering changing surgeries... will have to do some enquiries first.
I would insist on a referral to a Endocrinologist who deals with thyroid issues. 225 mg is considered an overdose by the NHS. He should never have dropped your dose that much so quickly. Was your TSH suppressed? That is what panic's them. You could just up your dose of thyroxin yourself back to 225 mg until you get your appointment for NHS Endocrinologist. You can buy Levothyroxine T4 over the counter in any European country without prescription. If you know someone living abroad they can buy some for a few Euros and post to you. Or if you have a friend going abroad on holiday. One thing I would say is that if you still have all your symptoms on 225mg maybe your body cannot convert to the active form of T3. Getting the NHS to prescribe it will be a battle though so you may end up having to go private to get it.
Personally I have been on every dose of Levothyroxine T4 from 225mg up to 350mg back to 125mg never got better just felt worse. Turns out I have the faulty DI02 gene and cannot convert T4 to T3. It would be money well spent to pay for private gene test, if it's positive you will have ammunition to insist on a trial of T3 only or a mixture of T4/T3. It takes 3 months to get a NHS referral and the first appointment is pretty much a chat then blood tests, then you have to wait 3 months or even 6 if you don't keep on at them. I know quite a few people with primary Hypothyroidism all got better on T4 within 3 weeks on the right dose, all of them on 100mg and symptom free. Even my own mother. Sadly not me, just suffered for 17 years. Told every GP, Endocrinologist I met that Levothyroxine was doing absolutely nothing for me. No one listening. Just told there must be something else wrong with you! But they can't say what. ME or CFS was a label they tried on me. Not to mention the ' happy pills' which I refused as they cause weight gain. Be firm with them but don't get angry, it's hard but I got labeled an aggressive patient. Why? Because I told the Senior Lecturer in Endocrinology at King's she was wrong about my diagnosis. But 17 year's on I have the proof. Stupid woman was training Endocrinology students. So you see the problem here, GP's are clueless about the thyroid. Go NHS route but jump off the merry go round if you don't feel better within 2 years. Then go private. I wish you well.
Thank you for your reply and I apologise for my lateness.
Yes, he panicked because I was now Over Active. When I told him I still have Under symptoms he just said 'You can't.' Simply.
For some reason, they really are against referral. I haven't met one GP at my practice that even considers the idea.
Thank you for the European tip, that is really easy for me (just didn't know you could get it over the counter!)
I will try the Gene test. I will bring it up on the next appointment and see what he will tell me this time.
I have been on the merry-go-round for 11 years now, found this forum recently, when I finally decided to start researching to see if I could take matters into my own hands.
First it's essential to get vitamins optimal and very many with Hashimoto's need to be strictly gluten free
Only add one supplement or make one change at a time and wait at least 10-14 days to assess before changing anything else
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
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