Hi there, just discovered “HealthUnlocked” & has been so interesting/ informative reading, so thought I’d see if anyone has any advice…
I was diagnosed with hypothyroidism about 6 / 7 years ago as my hair was falling out in clumps. I was also extremely cold, tired & suffering with depression. I was started on 100 levo which seemed to help. My blood pressure was also noted to be high (162/105), but seemed to settle when I stared the Levo. 3 years later my blood pressure was discovered to still be very high (178/106) I had 3 years of tests until I saw an endocrinologist who upped my levo to 125 & my blood pressure dropped down. I felt immediately better, but this didn’t seem to last. I still suffer with fatigue, aches & pains, depression & high blood pressure (150/104).
I have learned of various other medication on here e.g. T3, T4 & Lio. Not ever heard of being able to take these before or if they would be relevant to me.
I have attached my recent results (stopped levo for 24 hours, no b12 for at least 7 days etc)
Thank you for ANY words of wisdom ☺️
Previous results I have managed to get my hands on:
Date Results
09/01/19 TSH - 1.82
19/12/19 TSH - 0.90, T4 - 15.7, T3 - 4.1
15/06/20 TSH - 0.47, T4 - 22.6, T3 - 5.1
30/12/20 TSH - 0.23, T4 - 16.1
18/06/21 TSH - 1.12
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RosWel
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I have learned of various other medication on here e.g. T3, T4 & Lio
Liothyronine is T3.
Levothyroxine is T4.
The other treatment you haven't mentioned is NDT (Natural Desiccated Thyroid) which was the first successful treatment for hypothyroidism used in the UK, starting in about 1892. In that year the very first patient was given raw sheep's thyroid. I think she was in her 20s (?) or 30s (?) but lived to be 91.
Within a few years of first using raw thyroid it was discovered that it could be dried (desiccated) and ground up and turned into pills. (Hooray!) Since then sheep thyroid has been switched for mostly pig (porcine) thyroid pills but it is also possible to get cow (bovine) thyroid. This animal sourced thyroid was the only or the main treatment for hypothyroidism for about 70 or 80 years before the pharmaceutical companies developed artificial thyroxine i.e. Levothyroxine. They then started a concerted and long-lived campaign to make doctors think that NDT was useless and not well controlled. Those same myths are still taught to doctors today, but many patients feel their best on NDT and can't tolerate the artificial stuff.
Today, most doctors will take it for granted that the only treatment for hypothyroidism is Levo. Levo is fine for many people, but not great for all of us. The hypothyroid people on this forum are mostly the people who don't do well on Levo and are looking for help to feel better.
Levo is a storage hormone - it has little activity itself. T3 (Liothyronine) is the active hormone that every cell in the human body needs to work properly, and it is partly made by the thyroid itself and also by conversion of T4 to T3. Pharma companies have also campaigned against T3 for years, and doctors have been told that T3 is like cocaine or heroin or speed and that's why we all want it. This is despite the fact that all those doctors and pharma representatives have T3 flowing through their veins - they are nevertheless determined to keep us short of it, and never or almost never measure it in hypothyroid patients.
It is possible, in the UK at least, to buy NDT, Levo and T3 on the internet (from abroad, not from the UK) but it isn't an easy option. There are lots of scammers around, and it can be expensive. There are costs associated with buying your own even when it is a good product and it arrives in the UK. We have to pay VAT and delivery charges for example.
For those with a private prescription, Brexit has made things more difficult too.
I think your problem is that you are a poor converter. You need to have your FT4 slightly over-range, just to get your FT3 to 45.95% through the range, when you probably need it to be 75% or higher. T3 is the active hormone, needed by every single cell in your body to function correctly, and it's T3 that causes symptoms when it's too low.
It's not easy to find out why some people are poor converters. One reason could be low nutrients. But, apart from your B12, your nutrients look good. You could try taking selenium, see if that helps, but you're probably going to need the addition of T3 to bring your level up - if you can get hold of it!
no b12 for at least 7 days etc)
It's not B12 the problem where blood tests are concerned, it's biotin - B8 - that can skew results. Do you take a B complex with your B12? That would contain biotin and it's that that should be stopped.
The list of recommended thyroid specialist endocrinologist are by email from Thyroid U.K. …..rather than the list on Thyroid U.K. open website
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems.
Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Thank you, I will pay attention to how each brand affects me, then try to stick to whichever is best. I have gone through the same with the mini pill which I take for endometriosis & I am aware that different brands of that affect me severely!! It’s a nightmare getting the gp / pharmacist to prescribe the same 😩
Thanks for all the advice. Very informative & useful 🤩
So you have Negative coeliac blood test, can now consider trialing absolutely strictly gluten free diet -3-6 months minimum
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
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
Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Thank you so much!! Definitely going to try going gluten free again. Felt so much better when I did it before, then slowly reintroduced, and feel back to where I was before 😒Hopefully gluten free, and some T3 & I’ll have my spark back 🤞🏼☺️
Hi; If you need a prescriber I can introduce you to my private DR - he charges for consultation ; a few years ago it was £80 and for prescription £25 ( he gives me 4 bottles per prescription so it's OK) ...then he sends it by computer to Customised 4 U Pharmacy who can send you to NDT ( I use Erfa now); ERfa has gone up from £55 to £75 just recently for 30mg ; I noticed your last test didn't show the free T4 & freeT3 ? Best to test 12-18 hours after the last thyroid supplement; 24 hrs is too much so it will show lower in results.... Good Luck !
CRP - A measure of inflammation. Yours is under 1 which is excellent - the lower the better, and optimal is under 1.
Ferritin - This is a measure of your iron stores and yours is very good. Optimal is about 50% through the range or a bit higher. So, with the range from your results a good result would be about 85 - 120. Yours is already good.
Magnesium - Unfortunately, this is not a good test. Under 1% of the body's magnesium is held in the blood, and when the amount in the blood gets a bit low the body will steal it from other tissues. This means that it is rare for anyone to have an out of range result - and it still wouldn't be very trustworthy even if it was.
Many people on this forum supplement magnesium. The body uses the kidneys to excrete excess magnesium, so anyone with severely diseased kidneys may have to avoid taking magnesium, or would need to take a low dosage.
For more info on magnesium supplementation read posts by SeasideSusie on the subject :
Cortisol - I'm assuming your blood test was done around 7am - 9am. If this is correct then your cortisol isn't too bad. Cortisol has a circadian rhythm and optimal varies according to the time of day. Optimal for that time is around top of the range.
Vitamin D - Optimal for this is between 100 and 150 nmol/L, although there has been a recent article suggesting optimal is 125 nmol/L. You might find this link helpful to find a suitable dose of vitamin D supplements for you, if your vitamin D has a tendency to drop :
SeasideSusie has written a lot about vitamin D and the necessary co-factors (Magnesium and Vitamin K2).
Vitamin B12 - The test you've had done is the serum vitamin B12 test. The reference ranges in the UK are often very low. I've read that top of range in Japan is about 1300, although I don't remember the units.
Unlike other supplements vitamin B12 is not dangerous, and it is possible to take your level higher than the ranges if it helps you to feel better. A minimum level for many of us would be a minimum of 500, but top of range is good. Personally I keep my own levels at about 1000 ng/L and it has been higher.
[I've just noticed that your results don't include the units of measurement. Did they get chopped off your image somehow?]
Folate - Optimal for folate is upper half of the range, which would be about 35 - 61 with your range.
If you decide to supplement B12 or folate the best supplements are methylcobalamin (B12) and methylfolate. Most sites selling supplements would be likely to have them.
Thank you so much. That is so helpful!! And so good to know the science between hypothyroidism & hypotension being linked!! Over the 2 / 3 years seeing endless cardiac & heart specialists & everytime asking if it could be my thyroid (just had a gut feeling) they all said the two cannot be connected. 🙄 I have since learnt that they are & your explanation helps it make sense 😊I will get a copy of that book!!
& thank you. I do have health insurance, so will see if I can find a Dr who prescribes T3 😊
Hi . regarding thyroid hormone and heart ... this from GPonline (written by specialist registrar cardiologist and specialist registrar endocrinology) may interest you.. healthunlocked.com/thyroidu.... gps-told-keep-tsh-0.5-2pmol-l-hypothyroidism-causes-raised-cholesterol-thyroid-disease-effects-on-heart-and-cardiovascular-system.
Thank you so much! Very interesting to read. I wish I could go back & show it to all the doctors who told me that high blood pressure cannot be linked to hypothyroidism 😩
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