I was diagnosed as Hypothroid (not hashimoto) in December 2020. I was put on Levothyroxine and it took months to get the levels and brands right.
However... if I do no exercise at all, I seem to manage. As soon as I do some light exercise such as swimming, I end up with muscle ache, weakness and fatigue beyond comprehension. I spend 2 to 3 days and nights in bed sleeping almost continuously; after which I can then function again.
This is really getting me down as I used to be really active... hiking, dancing, mountain biking on a regular basis.
Has anyone else had this and overcome it? If so, what caused it and what did you do to overcome it?
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L-JT
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LJT to give a measured response we would need to know thyroid test results. It could be that you are undermedicated.Also have vitamin levels been tested?
How much levothyroxine are you currently taking Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking, if any
Please add most recent thyroid and vitamin results and ranges
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
I'm currently taking 75mcg of Levothyroxine - Acord brand as Teva gave me chronic nausea and headaches I started taking liquid folate and B12 3 weeks ago 400ug daily.
I cut out lactose over a month ago, don't eat bread, rice, potatoes or sugar. I actually have a healthy diet of fish, meat, fresh veg and lots of herbs and spices for flavour. I've always cooked from scratch.
I'm going to try to attach all my results.... there are lots.
I weigh 78kg, never even weighed that much when I was heavily pregnant, (I'm only 5ft 2), I've put on over 10kg in less than a year. I was told my Hypothyroid is not Hashimotos, just plain ordinary low thyroid.
I'm going to upload my blood results one at a time now... this will take ages as there are 38!
This is negative for thyroid peroxidase antibodies TPOab).. which are used to confirm autoimmune thyroid disease .. BUT
a negative result for TPOab doesn't prove you don't have autoimmune hypothyroidism (hashimoto's) .... there are hypothyroid patients with the characteristic pattern of autoimmune damage that can be seen a on a thyroid scan who do NOT have raised TPOab.
There are also another sort of antibody that NHS don't usually test for .. TGab (Thyroglobulin antibodies) raised TGab can indicate several issues but one of them is thyriod autoimmunity southtees.nhs.uk/services/p...
I think it is more likely that you DO have autoimmune hypothyroidism (but don't have antibodies, or have TGab but not TPOab) .. that that you don't ... it is the main cause in the UK ... and thyroids don't just 'get lazy and stop working' .. there always has to be a cause.
Unfortunately for us, doctors mostly only care about blood test results, few of them care about symptoms in hypothyroidism.
They also consider any test result to be fine as long as it is within the reference range - but patients have discovered that where a result is in the range is what makes the difference to how well we feel.
Suppose a (made up) test for X is carried out. The result is 10, and the reference range (the levels which doctors consider "normal") is 10 - 50. So, as 10 is within the reference range you would be told you are fine or your result was "normal". You'd also be told it was fine or normal if it was 20, 30, 40 or 50.
But, it might turn out that you felt your best if the result was quite high in range, say 40 - 45. Your doctor wouldn't consider that he/she needs to know that or that he/she could help you find that out. A result of 10 is in range, so the patient's result is "normal", and if she is still complaining then she needs anti-depressants.
It is true that some doctors might pay attention to a result for a test that was very low in range or very high in range and might change doses of whatever you were taking, but that is fairly rare. It is equally true that a doctor might look at a result which is just below range or just above range and say to themselves "that's close enough", and leave you under-treated or over-treated or whatever.
So it is very, very important that you ask for copies of your blood tests, including the actual results and the reference ranges. Given that you were diagnosed in December 2020 you should probably ask for all results from, say, January 2020, or possibly the year before. And always ask for copies from now on.
An easier method of getting results - if it is available at your surgery and where you live - is to ask for online access to your medical records including test results. This is available at some surgeries in England, but they aren't all set up to allow this, although they are all supposed to. I'm not sure of the details now but Scotland, Wales and Northern Ireland might not allow online access at all (but please check, just in case I'm wrong).
...
One of the effects of hypothyroidism is to reduce output of stomach acid. This has the effect of reducing the efficiency of our digestion, and means that our bodies can't extract nutrients very well from food. As a result most of us end up with poor levels of minerals and vitamins.
The ones that are most important to thyroid physiology are
Vitamin B12
Folate
Vitamin D
Ferritin (iron stores)
If ferritin turns out to be low it is a good idea to get an iron panel done to tell you more about iron levels in the body/blood. Iron is complicated, and supplementing it is only a good idea in certain circumstances.
If you are lucky your doctor might agree to test all these. It is worth asking. If you can't get them to agree then I'm afraid the only option is to pay privately. We can help you with info on how to minimise the costs of that, so don't pay for anything until you have checked with us.
P.S. I forgot to say - don't ask doctors for copies of results or for online access to your medical records and test results. You must ask the receptionists and provide proof of identity (and probably proof of address as well).
That's really interesting about the stomach acid and would explain quite a bit. I just wonder if there are natural ways to increase stomach acid and therefore absorption.
It is possible to buy supplements of artificial stomach acid called betaine hydrochloride. This can be sold with or without added pepsin. The pepsin helps to digest protein, which is difficult to do with low levels of stomach acid.
Please note that betaine hydrochloride is not suitable for everyone - it is essential you read the fourth link in the following list before even thinking of spending any money.
For info on this and related subjects these links might help :
Some people increase the acidity of their stomachs by taking (Apple) Cider Vinegar (ACV) diluted in water. It has been mentioned on this forum many times, and you can find lots of info on it all over the internet. There are many myths associated with ACV, so do plenty of research before believing anything. And if used incorrectly it can damage teeth.
Yes, it happened to me after a couple of years on Levo (which only fixed me about 80% anyway) ... and no, i didn't manage to fix it. But don't get depressed when you read that.
It was before the days of internet (for me). I never knew of this forum. I 'sort of' believed the GP who said "well, your thyroid results are fine now" so it cant be related to that. When my blood results went over the limit they said you mustn't take more that 150mcg Levo.
So I got sent to see the CFS/ME therapists. That didn't help .
So take my experience as a warning , and a nudge ... i never looked at my diet , it was pretty healthy anyway apart from sugar, i was pretty fit ,and not overweight, and very strong ...........but i never looked at improving Vit B12 , Folate , Ferritin ,Vit D , never looked at Selenium to help T4 to T3 conversion, never tried Gluten free to see if it helped, never asked GP to refer me to an Endo to see about a trial of T3 with Levo (didn't know it was an option), never looked into getting NDT and trying that (didn't know it was still made), didn't know any other hypo's to talk to about it. Just had one auntie who'd been on 250mcg of Levo for decades and was apparently absolutely fine.
I just learned to adapt my life round it .. it kinda worked , i still did stuff i loved... but if i had my time again, i'd come here 17 years earlier and follow up every dietary, vitamin test/supplement suggestion with determination , and then try T3/NDT if needed... cos i can tell you one thing for certain ..... The NHS can't fix this for you, and they'll probably never even acknowledge it's anything to do with your thyroid.
.......but i know more about how thyroid hormones work now ,and i see it is too much of a coincidence that the precise time i allegedly developed CFS/ME.. was exactly the same time that if i'd come here for advice i'd have been told" get those vit's sorted, try some selenium to increase T4 to T3 conversion, if that doesn't help , get your T3 level more in balance with your T4 level " .
... why didn't the NHS suggest that.... because they think thyroid hormone is a simple little thing to do with feeling a bit cold and slow , and getting a bit fat ... and they believe the TSH tells them all they need to know about it,( and they chose to ignore the ?15 % of us who don't get properly better on Levo , because we are a political Hot Potato)
So who knows what might have happened if it done all that from the start ...
You are at the start .and you've found your way here already... (17 years earlier than i did ..lol.) ~So you've made a very good start. Wishing you a speedy journey back to dancing on the top of hills
Wow, thank you for that. Going to try this one step at a time. Selenium first, I currently eat a lot of bananas, brazil nuts and spinach but may need a supplement if I'm not absorbing enough from food. Do you know which supplements are best?
If that doesn't work... gluten free is next.
If I get as far as asking about T3, what should I be requesting/saying?
(B12 feritin folate Vit d images further up post (SeasideSusie can you help with selenium supplement ?) .... knows more about supplements than me .... not all brazil nut's are equal . apparently they only have selenium if grown in selenium rich soil
I used Solgar Selenium in the past with success. Thought spinach was to be avoided with thyroid issues, but not sure. Bananas have a lot of sugar and sugar creates adrenaline spikes. If your cortisol is too low, this should be avoided.
Thank you Paquita, I'll get some of that selenium and give it a go.
I didn't know spinach was to be avoided... do you know why this would be?
With regards the adrenaline... I have a rather dramatic reaction to it. Which is very similar to caffeine, (which I avoid at all costs). The dentist put one tiny drop on my gum to stem the bleeding and within 20 seconds I was shaking all over, felt very weak, was dripping sweat, my heart was racing and I couldn't breathe properly. I had to take liquid glucose to stop it. She said she had never seen such a sensitive reaction before. I don't have adrenaline in injections as the reaction is even more pronounced.
My adrenaline fires up very quickly, a sudden noise or movement makes me very jumpy and my heart race, as does any stress or confrontation. I avoid anything that isn't a calm situation.
Brazil nuts have to have been grown in selenium rich soil to contain any. Then it depends in which area the nuts were grown in because the amount of selenium in soil varies. Eastern Amazon and Central Brazil have the highest amounts:
One member has said that M&S Natural Brazil Nuts say "harvested by hand in the Amazon forest and naturally high in selenium".
Also, check out Aldi's "The Foodie Market" Brazil nuts, the packaging is said to show selenium content as 79mcg per 30g serving.
Another one is 'My Garden of Eden' Brazil nuts from Home Bargains.. They say "High in Selenium and high in vitamin E" on the front of the packet and the Nutritional Information says "one serving (25g) gives 63ug of Selenium".
Too much selenium over time can cause the following:
Garlic breath
Nausea
Diarrhea
Skin rashes
Irritability
Metallic taste in the mouth
Brittle hair or nails
Loss of hair or nails
Discoloured teeth
Nervous system problems
Some people like to test for selenium level before supplementing. A safe dose for supplementing is said to be up to 200mcg. When I used a selenium supplement this is the one I took which is 100mcg and is a very small tablet with no odour (some selenium supplements can have an unpleasant odour):
Hi SeasideSusieI do prefer to take my micro-nutrients from food source as much as possible.
Thank you for highlighting that Se content is lab checked by Sainsbury.
The Duchy organic Brazil nuts from Waitrose is also lab checked. Not expensive compared to bulk-buy retailers. Italian source, much higher Se content than Sainsbury's, so less fat / daily dose of Se.
The enzymes, diodinases, DIO1 and DIO2, which convert T4 to T3 are seleno-protein. They have seleno-cysteine in their active sites for the enzymatic reaction. Even DIO3, which converts T4 to rT3, is the same.
Thank you all so much. I have lots of reading to do and things to try... so glad I have found this group. You are all so knowledgeable, helpful and supportive. 😊
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