Sorry to sound so hopelessly not-understanding, but I've had private blood tests done, the results just came back, all 'within the normal range' except TSH which was 0.086mIU/L and says very low. But I haven't been prescribed anything to lift it. Doesn't it matter that it's low if my T4 and T3 are ok? I thought I'd asked the right questions at the appointment, but couldn't ask this as I didn't know the result.
Feeling bemused, as well as the usual exhausted and brain-foggy cluelessness.
Help!
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RaggedyA
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You will need to publish all the results with ranges so members can comment.
Very simply, TSH is Thyroid Stimulating Hormone and in a healthy person this would go up and down telling your thyroid to produce the right thyroid hormones (T4 & T3) for your body’s needs.
If someone is hypothyroid, your thyroid can no longer produce enough thyroid hormones so your TSH goes up and up.
When hypothyroidism is diagnosed, levothyroxine (or other thyroid hormone replacement) is prescribed and your T4 & T3 should go up and TSH should fall again (ideally to below 1).
If your TSH is very low, most likely “causes” are that you may be overmedicated, or you may be having a hashis flare. You can’t tell what is going on until you look at all your results though. If your TSH is a little low, but your T3 is within range and you feel well that may be fine for you.
To answer your question though if you want to raise TSH, you can’t take TSH, you lower your thyroid hormone replacement medication. You may not need to do this though so please publish all your results so other members can advise.
I've been trying to understand what seems like a foreign language, gradually grasping the whole T3/4/TSH thing, thanks to you and others who take the time to explain it.
I was told to ask my GP for a thyroid 'hot spots' test... something else to look up.
The allergy results will be through in a week, so will wait until then and work out how I should change my diet. I've been advised to try Paleo. I'm willing to try anything!
Taking anti-depressants for over a decade has probably messed up my metabolism too, so I've already cut them a bit.
What allergy testing have you had done? Proper allergy testing can he helpful but food intolerance tests are not accurate. Usually these test for IgG antibodies which clinical studies have shown merely indicate what foods you have eaten recently and you will get a different result each time.
I would be careful about a paleo or other low carb diet if you are hypothyroid as like low calorie diets, I understand that low carb diets lower your T3. I know when I tried low carb shortly before being diagnosed, it made me feel very unwell.
Genetically engineered recombinant TSH (branded Thyrogen) is a product. However it is only used, so far as I am aware, in a few circumstances, as a diagnostic tool in thyroid cancer treatment.
It is not something you could take as a tablet every day.
Generally low TSH is widespread among people who are treated with thyroid hormone.
I'm gradually getting a better understanding, thanks to the time given by you and others to explain. I am so pleased that I stumbled upon this site as it has given me hope.
If you are now taking T3 or NDT (looking at previous posts, think you may be)
TSH is nearly always very low or suppressed on NDT or T3
The most important figures are FT3 and FT4
If you add your most recent blood test results and ranges members can advise
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If also on T3, or NDT make sure to take last dose 12 hours prior to test
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
I'm going back to my GP with the private results to see if he will adjust the doses as recommended. I'm not on T3 or TSH, had the private tests to see if I needed them , but was told to reduce Levo and anti-depressants... and stress - hmmm, not possible at the moment, and probably 6 months before I'll have my life back. If only the emotions didn't rule the body!
The only point of doing that might be in secondary hypothyroidism when TSH does not rise and stimulate production of thyroid hormones as the pituitary doesn't put out enough TSH. For all other thyroid conditions it would be pointless as generally the reason that thyroid hormones are low is that the thyroid is unable to produce them, so hitting it with a bigger stick wouldn't do any good. Your TSH really doesn't matter when you are on meds as long as free t4 and free T3 are optimal.
Thanks for your help, there's a lot for a newbie to think about, I'm very grateful for the responses and finally feel I have a way forward, even if it'll take until well into next year before I can really make headway. At least I'm laying down the plans for a NON-overweight, tired and fed-up future. I haven't spent the day sitting on my bed with a t-shirt over my head for a fortnight... that's progress!
REallyfedup123 said it correctly. If the pituitary (which produces the TSH) has poor communication or too much communication with the Thyroid, then it will act upon it what it 'reads' the amount of T4. It is a feedback loop: more THS = less T4 and vice versa.
So that's why the doctor at the private clinic two weeks ago said to reduce my Levo. Have started already (before seeing my GP) and hoping to notice a difference before I get called in for my routine NHS blood test.
I wish there was more information given to us when we're first diagnosed, instead of 'take this and you'll feel better and lose weight soon', which raises hopes and makes us depressed when it doesn't happen.
This site is rapidly becoming a lifeline, thank you
Yes, I have found most doctors do not explain much to you about test results or the ramifications of them. We have to push for questions and do research on line. I have a lot of other medical issues and now always take my wife in for two: make sure all the questions are asked and so if one of us does not remember, the other might. Bring a list of questions to your appointments. If you have a lot of questions, let them know when they come in. If they are not willing to listen get a new doctor.
Thanks for your reply, something else to consider.
I've been advised to go back to my GP with the private blood test results, waiting until further tests results and a big hit of courage appear. I'm embarrassed to go back after a major wobble a year ago, but can't afford another private visit, like so many of us on here.
I do feel I have a bit more understanding now and hope you're having success too.
TSH 0.09 0.27 - 4.2 1.14 - 2.2 very low Total T4 119 66 - 181 normal FT4 20.7 12.0 - 22 14.2 - 18 high FT3 5.48 3.1 - 6.8 4.64 - 5.35 high FT4:FT3 3.77 2.0 - 4.05 optimum TG antibodies 16 0 - 115 less than 35 optimum TPO antibodies 30.2 0 - 34 less than 35 optimum
I was surprised that so many of the numbers are optimum or normal as I feel SO rotten, and have done for so long. All the usual hypo symptoms, which I thought was due to the Levo not working properly, but now I don't understand why. Following the results I was advised to reduce my 100 of Levo to 75, which I have, and to reduce my anti-depressants, which I have, but only slightly as it'll take weeks/months to reduce a lot as I've been on them a decade.
Trying out the recommended paleo diet too, so I'd be interested to hear if that has helped anyone else.
Feeling down in the dumps - stupid when my results are good or ok.
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Specialist said he thinks it might be a 'leaky gut', that's why the new diet. He did a food allergy blood test, the results aren't in yet. Hoping there may be something there that is causing my gut problems and that I can cut out. I intend to keep on cutting down the anti-depressants. He suggested I try a different methods of relaxation as well as meditating, especially until my life is back on track. He also thinks that living with chronic anxiety & stress knocks the thyroid off-kilter... so that's the last 10 years of my life If he's right, and I get somewhere back to normal next year, I will certainly post it. I am so impressed with the level of support on here
You’re a star! Going to buy a set of glass pans, always used to use them until I was given a posh set of non-stick some years ago. I’ll check to see if there’s flouride in my anti-d’s.
I’ve been buying flouride-free bottled water for 18 months, I get saskia from Lidl as it’s less than half the price of highland spring I was getting before.
I’m still waiting for the allergy results, so there may be something there. Will also get Bio Kalm to try.
Thank you for all your advice, it’s much appreciated
I got the glass pans originally when there was a aluminium scare years ago and it was linked to Alzheimer's. I cook most of my own food from scratch, so hopefully that'll make a difference. It's just a shame we aren't given fact sheets with these suggestions when we're diagnosed hypo.
Maybe I'll consider a stainless steel frying pan for my paleo pancakes - yep, I'm really taking this healthy eating seriously. Looking forward to fitting into the jeans that have been sadly stowed in a suitcase on top of the wardrobe for 8 years - sob!!
Hi again! I’ve spent the last few days being horrified by how much aluminium is in everyday products, including my deodorant, and make-up. Now checking every label as i’m determined to banish it from my home. Also have sent for zinc, selenium, iron and Vit D, vit C as the tests showed I was significantly lacking in them and I was told they help the thyroid. Doing all I can to get on top of this condition. Have also cut out dairy, grain and sugars. Hoping that in 6 months I’ll feel like me again. The first week or so I felt rough but much better now. Thanks for your advice and I hope you’re well and happy after your unfortunate experience. It must have been devistating, and I suppose 30 years ago it would’ve been more difficult to get the facts about aluminium. I really appreciate you and others passing on your knowledge. Best wishes 🙂
Hi, just a quick update, now i’v been eating paleo for almost a month and have been taking the recommended supplements for a week. Have also bought non-flouride deodorant from Boots, £2.35 - a bargain! I’ve been cooking in a stainless steel saucepan and cast iron frying pan - which is only 10’’ across but takes two hands to drag across the work surface, even when empty! And the first few batches of paleo pancakes were mounds of pieces about postage stamp size! But, I feel so much better, only one day of IBS, instead of most days, and i’v been sleeping better, often waking refreshed - which is amazing.
I also cut out Brazil nuts, beetroot and mushrooms as the private blood tests indicated I have an intolerance. Bit miffed about those 3 as I was eating a lot of all of them!
However, nothing tastes as good as being well feels, and no point in half doing it, especially as I put all the costs on my credit card 🤫
Hoping now that psoriasis and arthritis will improve.
Thinking you had cancer must have been frightening, and to have been so frail as to need a wheelchair, alarming. Did you find a doctor who understood, or did your have to research and heal yourself? That’s why this site is a godsend, but it’s about time the health profession gave us the same guidelines.
I hope that now you are well and happy. Best wishes, Annie
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