New here been searching in desperation for some answers.Had overactive thyroid 39 years ago on beta blockers for 4 years gradual reduction until not taking any.
Mum/sister under active thyroid,
July time 2021 started getting buzzing in my ears, not feeling well, told tinnitus, ( my sister died may 2021, I thought it might be stress)
About January 2022 sent for a thyroid blood test, (GP had been telling me at some point my thyroid would become under active ) blood test results said see GP.
GP said my level should be 10 before being started on medication, mine were 8, but he said he would start me on medication if i wanted to ,i was feeling so unwell I said yes, 50ml of levothyroxine.
My mum and partner died within 6 weeks of each other april- may 2022.
Stopped taking the levothyroxine.
Grief overtook everything.
Went back on the levothyroxine about 4 weeks ago GP said levels were now 8.5,
I feel worse, more tired, lack of concentration, buzzing in ears worse, depressed.
Been researching and heard about ntd wandering if I should try that .
Thanks for any advice
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Dawney63
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I'm sorry to hear about your loss and your troubles, I really feel for you. There is so much to consider before you take the NDT route.
You need to post your complete thyroid panel test results and key vitamin levels before anyone can advise you on the forum.
TSH, FT4, FT3.
Vit D, Ferratin, Folate, B12.
Low ferretin & iron can cause tinnitus. So may be worth looking into.
Lost of people on here benefit from a good whole food diet free from soy, gluten, processed and free form vegetable fats. Some people are diary free as well and others would say that is a must.
HiThank you, I had a test september 2022 these were the results.
I will take another test and ask for ferratin to be tested, my doctor said I had low folate levels about 3 months ago and he prescribed a course of folate tablets he says the levels are ok now so not to take folate.
The first thing you need to do is start collecting your results & seeing what being tested & what the results are.
The level your GP is taking about refers to the TSH. Thyroid stimulating hormone. It’s a pituitary hormone which signals thyroid to produce. Low usually means circulating thyroid hormone are high, in range means so should thyroid levels & high mean thyroid level are low and the signal is higher trying to make thyroid work harder.
But the TSH is not reliable and your actual thyroid levels should also be checked the - the free thyroxine & free triiodothyronine or FT4 & FT3 for short.
By the time the TSH is 10 you are overtly hypothyroid & many can be started much earlier if TSH above range 2x 3 months apart. Especially if antibodies have been tested.
These are called TPO antibodies (Thyroid Peroxidase antibodies) sometimes TGab (Thyroglobulin antibodies) are tested too.
I think that before adding NDT - which you would likely need to source & pay privately & your doctor would also likely not support, there are other things to check.
50mcg Levo is a starter dose and after 8 weeks of consistent use you need to be retested & slowly add 25mcg per day to dose.
Initially the dose “tops up” thyroid levels but by 6-8 weeks that replacement “replaces” what the struggling thyroid can’t produce.
This needs to be done in stages and until TSH is always under 2, or nearer 1. Not just until TSH is in range. I think your doctor, who thinks treatment isn’t necessary until TSH is 10, might be the sort that doesn’t look beyond the TSH & will think any result in range is acceptable.
FT4 should have been tested a some point but FT3 the active powerful hormone may not have been. Levo works best if nutrients are optimal & if hypothyroid often they become low, have folate, ferritin,B12 & vitamin D been tested?
Low nutrients can mean Levo which act like a storage hormone does not effectively convert to the active FT3 in your body.
Many use private testing companies using a fingerprick test kit, to get a full picture.
Very sorry for your losses, that sounds very traumatic.
It would help if you understand how thyroid treatment works. Levothyroxine is a storage hormone and takes 2 weeks to begin working. You have started back on a starter dose of 50mcgs which is a pretty low level and wont be enough to replace what your own thyroid should be making.
6-8 weeks after you restarted the Levo you should get a blood test done.
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 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Your doctor should review your blood results and increase you by usually 25mcgs, continue for 6-8 weeks, blood test, repeat.
So at 50mcgs you're not on a high enough level of Levo to make a difference yet and will need several dose increases before you feel any benefit.
Low doses of Levo can make people feel worse, this is normal.
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.
Its essential to test your vitamin levels for ferritin, folate, B12 & d3.
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/help-and-supp...
Realistically you are looking at many months before you feel much better having got your levo dose increased and vitamins OPTIMAL.
It is not wise to stop any thyroid hormone replacement as this medication is for life -
you don't ' get better ' from hypothyroidism - it's a chronic condition and needs medication and monitoring for life.
The thyroid produces, on a daily basis, trace elements of T1. t2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
T4 is Levothyroxine and the hormone replacement routinely prescribed to everybody and works well for around 80% of those taking it and the easiest option for patients to have to think about.
We generally feel at our best when our T4 is in the top quadrant of it's range -
do you have any results and ranges there to share with forum members ?
Some people feel better taking a little T3 - Liothyronine with their T4 :
Some can't take T4 and take T3 only :
And others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as tablets.
No thyroid hormone replacement works well until core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels :
You might like to read around on Graves Disease if that was what you were diagnosed originally and the most well rounded of all I researchers is that of Elaine Moore -
Personally I don't have a great deal of confidence in labs. If you are having symptoms of an underperforming thyroid first check to see if your selenium levels OK cause if your selenium is low you won't be converting T4 to T3 no matter how much your thyroid produces and also check to see if adrenal gland is OK it is affected major league by stress . Lev. is a hormonal replacement and that stuff is powerful and nothing to be toyed . I had no symptoms and doctor put me on due to an elevated TSH and it threw my body into HYPERTHYROID which is horrid and left me on it despite the fact I complained, so after 4 3/4 and a whole lot of reading I weaned myself and told the doctor who was major league annoyed. That stuff destroyed my health, so I have rather strong opinions. I wish you well I really do, but my recommendations are sound and research as best you can cause it is your life and you deserve the healthiest life you can have!
Hello Dawney63Likewise, welcome to this forum. I'm not an expert but agree that you need to stay on your levothyroxine & wait till it gets into your system. Unfortunately, if does take a few weeks to feel the full benefits by which time you are starting to give up hope. Once this happens you will feel so much better. If you start to go downhill again then maybe an increase will be required but all this does take time. I also get intermittent earache when my levels are out of balance. It's always a tell-tale sign for me. Because the weariness, headaches, etc, come on gradually we don't initially realise what the problem is & put it down to "feeling off". With help from this forum you will learn the right things to ask your GP & gain from confidence from fellow sufferers. Sorry to hear of your losses but stay strong.
HiThank you, I read your story, I kerp saying to my friend I can't go on like this, been 2 years now, people keep saying its due to grief as lost dad, brother, nephew, sister, mum, partner in last 5 years but I know there's something not right with me.
Taking prescription reflux tablets, blood pressure started randomly rising 2 years ago, My partner thought it might be caffeine so I'm having caffeine free coffee and tea. Now taking blood pressure tablets and statins.
Sleeping is awful, anxiety really high, palpitations, I'm going to have a blood test to test everything everyone has recommended on here.
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