Thyroid UK
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TSH 65

Hi everyone,

I was diagnosed 10 years ago as hypothyroid, and was on 175mcg Levo. Before this I had been the living dead, (my mum used to say I looked like death warmed up), and went to the docs with my symptoms, weight gain, hair loss, lethargy, chronic tiredness, low mood, aches, brain fog, all the usual suspects. He put me on antidepressants. No tests. After going back and back as they didn't work, with him saying, "give it a few more weeks" etc, I read an article about Coeliac disease and thyroid, and as I am Coeliac I asked him to test me for Hypothyriodism. (He was not aware of any connection). I got the raised eyebrow/smirk but he agreed, SO good of him to do his job, like, and results came back positive. So I have been taking them for years, but never feeling like I know I should, you know, like, "normal" so that everyday stuff isn't a chore, that I don't need a nap on the hour every hour. I have been back to all the different docs at my practice, saying I still feel tired and sluggish but my results are within range. Gradually I was getting worse and resigned to my fate! However, about 12 weeks ago my thyroid test results were TSH 65.7 (0.3-6)

FREE T4 12.8 (9-24) and FREE T3 2.4 (3.5-6.5). So he has increased my Levo by 25mcg. I said to him about T3, and he said all of his thyroid patients do well on just Levo, as they are monitored. Well nobody asked me I said, and I am one of them. Crossed his arms and off you go batty old woman, you obviously need Prozac....and possibly an anger management course...

So. I got some T3 online and after a week it was astounding, I felt fine for the first time in soooooo long. Normal energy, weight loss, clear(er)! thinking, shoulder pain gone, and after 6 weeks I got retested and results are within range apparently but he hasn't asked to see me as he obviously thinks it was his increase in Levo that has made me better. I will have to go to see him and am dreading it, truly. Only thing now is I have no more T3 left, and the online source says they have none, and it has been 2 weeks and I definitely feel worse, and worried about not being able to get any more. I feel it was 10 years of my life I lost, when there was no need. Getting my own T3, and reading up about stuff was dare I say it 'empowering', and now I have lost that. I am still trying to source some but have had no luck, possibly the US is a source? Strange how an ignorant wee man (GP!) has the power to decide my health.

On another tack, which may have been covered, was sourcing natural animal thyroid? What happens to the thyroids and other glands from slaughterhouses? Dog food? Should we eat dog food?!! I wonder if there is thyroid issues because we don't boil up a hare for soup, thyroid and all, anymore?

Sorry to go on, if there is anyone still reading. I found once I started it just kept coming. There is more....ok, ok, I wont. Thank you to everyone who is on this, I find your stories inspiring, I do love reading them, only I get lost going off on the tangents!

Wish me luck with GP. Sigh.

18 Replies
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Bless you that made me smile😊 Typical arrogant GP! Will pm you.

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dinglebell As you have been on Levo for many years and you recently had results of TSH 65.7, I think there may be a distinct possibility that you have autoimmune thyroid disease aka Hashimoto's, which is where antibodies attack the thyroid and gradually destroy it. Antibodies fluctuate causing fluctuations in symptoms and test results, and this could account for your very high TSH. Many Hashi's patients are Coeliac, Hashi's and gut problems seem to go hand in hand.

You could ask your GP to test antibodies, but there are two types - Thyroid Peroxidase (TPO) and Thyroglobulin (TG). NHS rarely test TPO and almost never test THE, certainly not at GP level. You can do a private fingerprick test with Blue Horizon or Medichecks, they do several thyroid bundles and some of them include both antibodies.

If doing a private test, it's advisable to get vitamins and minerals tested too. These are often low or deficient in Hypo patients, and as you are Coeliac this may affect absorption and you could very well be deficient.

I suggest the following test, post your results on the forum and if you do have Hashi's there's lots of information we can give you to help, and we can help with suggestions for any nutrient problems too

bluehorizonmedicals.co.uk/t... or

medichecks.com/thyroid-func...

Both test exactly the same.

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Thank you for the info and advice, and yes I think so too. Just recently I have started taking iron, folic acid selenium, B complex, and I'll see if the Doctor will do more tests. Will the T3 I was taking before show up in tests done next week, so about 3 weeks ago? I don't want an inaccurate result for the doctor to decline my requests! I felt pretty good on the T3 though, like a different person.

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dinglebell Did you get vitamins and minerals tested before supplementing? If not you should. Too much iron is as bad as too little. As there's folic acid or methylfolate in a B Complex, then supplementing two forms of folic acid may send your folate level too high. A high folate level is OK as long as B12 is high.

T3 has a half life of approximately one day, so after 3 weeks I imagine there should be no detectable T3 showing in your test.

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The level of Free T3 may have returned to "normal" after three weeks without it but getting the TSH back to "normal" may take a bit longer. It could turn out to be lower than expected.

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Yes. Ok, thanks for that. It is such a juggle!

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Ok, thanks.

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Then why not consider switching to Natural Dessicated Thyroid / NDT

Many people inc all my lot have had no option but to do so

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I'll have a look at that. Thanks. Will you explain why that was your only option?

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Because years on levo or levo and t3 or t3 alone did not resolve their suffering no matter what dosage or how good their blood results were

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Ok, but isn't NDT like T4/T3? Is it because Levo is synthetic?

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Yes of course NDT is natural and also contains T1 T2 T3 T4 and Calcitonin

whereas levo or t3 are synthetic and derived i understand from petroleum products with methylated spirits thrown into the mix

Fat bloomin use if your someone who is chemically allergic

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Which levothyroxine or liothyronine products are derived from petroleum?

Which desiccated thyroid products do not have questionable ingredients such as aluminium-based colours, coatings, and other excipients?

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i understood all levo was derived from petroleum products

every T3 he ever tried had methylated spirits listed

same goes for daughter and grandaughters

i am well aware of the coating on thyroid-s and yes would prefer to avoid it

but if quality if life on NDT is good

but on levo or levo plus t3 or t3 alone is living hell what choice would you take

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We need to support any claim such as "derived from petroleum products".

We really don't need any more un-supported statements which get quoted, repeated, recycled, and end up obscuring reality. If levothyroxine is derived from petroleum products, that information will be available. Let us avoid "understand" without evidence, please.

Which liothyronine (other than Tertroxin from Glaxo > Goldshield > Mercury Pharma) did he try?

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I know i checked the patient leaflet that came with all the t3 inc cytomel he tried inc one from Brazil and they all listed methylated spirits

Its too long ago now to still have the leaflets but i renember how shocked i was that t3 contained it knowing how acutely he is affected if i dare to open a bottle of methylated spirits or acetone or nail varnish or oil based paints or varnishes

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Pfizer Cytomel (might have been King then) has the following ingredients:

Each round, white to off-white Cytomel (liothyronine sodium) tablet contains liothyronine sodiumequivalent to liothyronine as follows: 5 mcg debossed KPI and 115; 25 mcg scored and debossed KPI and 116; 50 mcg scored and debossed KPI and 117. Inactive ingredients consist of calcium sulfate, gelatin, corn starch, stearic acid, sucrose and talc.

dailymed.nlm.nih.gov/dailym...

Of course, that is no proof of ingredients many years ago.

It is also intriguing to consider how natural petroleum is. Formed many millions of years ago before even proto-humans existed. Frequently flows onto the surface by itself. What is unnatural about it?

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I wish i understood the hyperallergic state too

All i know is what happens if i dare to open methylated spirits etc in the house

Just the same as the minutest contact any food has with aluminium severely affects me

We all seem to have a weakness of some kind in one arm of our immune system

Aluminium left in the ground is not a problem but cook food in aluminium pans and all hell can be triggered

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