4 years ago in 2019 my thyroid levels were showing underactive borderline I managed to get into normal range and all I did was take Seamoss gel. However it's returned and now my TSH is 10.38 and T4 around 9. I do feel lethargic and fatigued and the GP wants to stick me on to a low dose of levo.. I don't believe this is the right road to go down I would like to know if anyone can give me any good advice to bring the ranges down before I end up full blown underactive and reliant on GP's Meds.
Thanks in Advance
Written by
Jbl65
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I know its awful to think you will be on medication for the rest of your life but you really are full blown hypothyroid now. Once the damage to your thyroid has been done then there is no going back or healing I'm afraid.
Often the damage is done by antibodies in an autoimmune attack. Have you had your antibodies tested? The NHS only test TPO type but privately you can test Tg also.
In the early days of subclinical hypo result numbers do jump around from higher to lower as the thyroid struggles to keep up output of hormone. Eventually your numbers just continue to increase like yours have and we have to replace the thyroid hormone output with Levothyroxine.
Every cell in your body needs thyroid hormone to work. Hypo people are given free prescriptions as the hormone is needed for life.
GP should start you on 50mcgs. Some GPs start people on 25mcgs but its such a low dose it can make people worse in the first few months.
Take Levo for 6-8 weeks and then retest your levels. GP should then increase your dose by 25mcgs until your TSH is at or below 1 where most people feel well.
reception.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Sounds like you're talking about the TSH. TSH is not your thyroid. It is a pituitary hormone.
When the pituitary senses that there is not enough thyroid hormone in the blood, it increases it's output of TSH - Thyroid Stimulating Hormone - to stimulate the thyroid into making more hormone. So, the lower the thyroid hormone levels - T4 and T3 - the higher the TSH, and vice versa. The TSH level follows the thyroid hormone levels, it does not control them. So, even if you could artificially lower your TSH, it would not stop your thyroid failing and you becoming full-blown hypo.
The reason the seamoss appeared to bring the TSH down is that it contains high levels of iodine. Iodine, in the first instance, will stimulate the thyroid to make more hormone. The extra hormone will cause the TSH to drop. But a stimulating a sick gland - which your thyroid obviously is - is the worst thing you can do because that just hastens its demise. And, in excess, iodine is anti-thyroid, and will just make things worse.
So, the only solution, I'm afraid, is thyroid hormone replacement, because you cannot live without thyroid hormone. Levo is the thyroid hormone T4 - it is not a drug. And T4 is converted to T3 within the body. And, if your thyroid is failing, at some point or other, you are going to become dependant on it. That is a fact of life, and it's far better than the alternative!
If your hypo is due to autoimmune causes then its very unlikely that you are going to be well and healthy unless you start on Levo. Levo isnt a medication, its just the synthetic version of the hormone your thyroid produces. Or not, in our case.
90% of hypo is daused by autoimmune attacks. The seamoss might have helped back in the day but its equally likely that in Hashimotos ( AI hypothyroid) your thyroid levels jump around a lot anyway and the seamoss did nothing.
No one wants to be reliant on medication for the rest of their life, but nor do you want to be tired and fatigued. Plus untreated hypo can lead to other complications like cardiovascular disease and high cholesterol, plus a host of others. So unfortunately it sounds as though you are going to need it.
Thank you for that information. I just believe that the GP could of done a more in depth test and when it flagged up 4 years ago it went back to normal and stayed normal upon till recently I had a loss of a child 2 years ago and have been under immense stress and maybe that's not helped. I have read a lot of side affects of levo and there are a good 30 and scares me to even take as I'm usually the one that gets all the sides.
I'm very med sensitive usually. I have Ehlers Danlos and it goes with the territory unfortunately. But I've been fine on Levo. Levo or T4 is a storage hormone that doesnt do much until its converted into FT3, the active thyroid hormone that gives us energy, controls our metabolism and much much more. You can in theory take a whole week's worth in one go. Many of the issues with Levo come from either under or over medication. It can be tough to get the dose right and it takes time to fine tune it. The other problem are the excipients or fillers in the tablets. These can cause issues for some and changing brands can help. Once you find a brand you like you can request your GP states that brand on your prescriptions.
There are alternatives to Levo, NDT or natural dessicated thyroid, made from dried pig thyroid. It was how hypo was treated until they invented Levo. However its very rarely available on the NHS and you will probably need to go private to get it.
Drug manufacturers are obliged to state all the reported side effects on the patient leaflet, no matter how unusual or rare. Frankly any medication can have side effects, even paracetomol.
I am sorry for your loss, that must have been devastating.
If Asprin hit the market for the first time, it would probably be just available on prescription as is can be dangerous, as can any drug. Levo is a hormone, just replacing what your body should make, but with a TSH of 10.38 your body is screaming out for help. If you do nothing, you will get seriously ill, your brain and heart need a lot of the thyroid homones. Every organ in your body, and including your hair, teeth, fingernails, everything needs it.
The longer you put off starting Levo, the longer it takes to get normal results and feel well. Yes, it is a pain in the butt to have to take a pill for life, but the alternative is death. Yes, really. As I said, your heart and brain need high levels of this hormone and a slow decline into senility or a heart attack await if your homone levels are not met.
There is no other way round it. Believe me, I have looked!
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