I had full blood works tested at the start of the year,as i have always suffered anxiety as well as mild depression and OCD,as well as tired often,thinning hair,and mild tinnitus in the right ear etc,and reading many forums i was led to believe i could have hypothyroidism (history in the family)
My TSH came back 4.5 but the doctor said no need for treatment at this level (0.4-4 reference range)
I asked if i could try,as i read it can cause some of these symptoms i have.
(Cholesterol/Liver and diabetes was close to borderline too)
Said come back and retest bloods in 3 months…
Seems GPs only want to prescribe if TSH is out of range,but thyroid uk website says it is good to get close to 1 TSH for most people to feel properly well.
Retested 2 weeks ago.
Cholesterol,Diabetes and Liver have all dropped to Normal range from borderline,which i worked to get down.
BUT my TSH was up to 5.4miu/L (0.2-4)
Serum Free T4 14.1 pmol/L (10-20)
Result Subclinical Hypothyroidism
I was kind of happy about this,as finally i may be put on a medication that would help with my symptoms - anxiety/tinnitus etc (Tried anti anxiety meds before,but too many sides)
GP prescribed me 25mcg Levothyroxine 10 days ago,and said to come back in 2 months,and a month later for repeat blood tests.
She also booked me in for an MMRI scan and Pathology test,as i told her about the tinnitus in the Right Ear only at he time,but no date confirmed yet.
A few days after starting the medication,my tinnitus has gone from Mild in one ear (right) to both ears now.The ringing/buzzing is constant,and varies in pitch and loudness.Sometimes throughout the day it is back to just the right ear,but often now it is both,especially at night.
Had one day where it was really quiet all day a few days ago,then got louder at night.
It was only slight before medication (started end of 2023 in right ear only)
Any advice appreciate please on the tinnitus cause,and could the levo have made it worse/Not on the right dose?
I’m really worried,as it got worse straight after i started on the medication and i don’t know what to do.
I have read many issues of tinnitus with hypo,but a few doctors have told me levo will not help tinnitus,even though many posters say hypo can cause tinnitus.
**I would also like to add that i have read Vitamin B12 can help Tinnitus,so i take 1000ug Vitamin B12 dual power (methlcobalamin 666ug and Adenosylcobalamin 334ug)
As well as
5000iu Vitamin D3 + K2 (100mcg)
Multivitamins
Biotin 12000ug
Cod Liver Oil
also
Dutasteride (0.5mg) & Oral Minoxidil (2.5mg) for Hair loss & for Preventative loss.
Thank You
Written by
Foxy147
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
Anxiety is a common symptom of low thyroid hormones. You may well eventually feel an awful lot better than you have been for a long time but it takes many, many months to get to that point.
25mcgs Levo is a low starter dose suited to frail people with heart issues. A more suitable starter dose would have been 50mcgs.
The trouble with a low starting dose of Levo is that it replaces your own hormone production, it doesn't top it up, so you can be left worse off in the initial stages of treatment if its less than what you were originally producing.
That may be the problem with the worsening tinnitus but once you get to higher doses it should improve.
Usually we start on a dose then retest every 6-8 weeks and each time go up a dose until our TSH is at or below 1.
Something else that can cause anxiety is low ferritin levels. This is the storage form of iron.
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.
Taking B12 & vit D is great. Have you had your levels checked since you started supplementing?
Its usually recommended to take a B complex that contains both B12 and folate, also biotin and other B vitamins. This helps keep all the B's in balance.
B complex suggestions: Slightly cheaper options with inactive B6:
Are you aware that biotin can affect thyroid blood test results? You should stop taking biotin or a B complex that contains biotin 4-7 days before a thyroid blood test.
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.
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.
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.
Multivitamins aren't recommended due to containing iodine which isnt recommended. They usually only have low doses of cheap, inactive vitamins and contain iron that can prevent you absorbing the other vitamins in them.
First of all,thank you so much for the detailed reply,i am much more optimistic now.
I will indeed complete my profile asap.
Do you think i should go back to my GP soon to try to get an increase from 25-50mcg?
they told me to go back after i had taken 25mcg for 2 month,but i think i will go back Monday and pressure them.
The problem with the GPs is,they don't even want to put people with sub-clinical hypo on it in the first place,let alone get the TSH down to around 1,which everyone says will make you well at you best.So they may not agree,as many also say no link between tinnitus and thyroid,which is absurd,a simple google tells them low thyroid can increase tinnutus,so not much faith in my GPs (only the 3rd one at my surgery put me on 25mcg,after reaching 5.4TSH)
They never told me to do the blood tests on an empty stomach in the morning too,no biotin etc! (I didnt take biotin for 3 days before,as i read this in here)
I will also ask them to test for levels of ferritin, folate, B12 & D3 as this was not tested.
I started the b12 vitamins at the same time as i started Levo,so i was even paranoid this could have worsened the Tinnitus!
I don't know if i had positive antibodies,just the results in my screenshot posted for the thyroid results,everything else was within range (liver,chlolesterol,urea and electro)
Chol,Liver and diabetes actually came down a fair bit from borderline to normal in the 3 months between my blood test.
Yes,I take on an empty stomach 1st thing in the morning (would last thing before bed be more advised?)
As i say my initial Tinnitus started mild around dec 2023 in just the right ear.
I noticed it started shortly after starting taking minoxidil 2.5mg tables (rogaine foam minoxidil did nothing,as bad for the scalp for many,itchy etc) but i just put this down to coincidence,as its such a low dose when using for hair loss,and hair experts say (treats high blood pressure at doses of 7.5mg and Upwards)
I even stopped for a week as was worried it could be oral min (only has a half life 4.2 Hours)
oral minoxidil acts as a vasodilator to increase blood flow to hair follicles, promoting hair growth
You can try going back to GP to ask to go to 50mcgs. It may or may not work but probably worth trying anyway.
Some of what you read here are patient to patient tips and no doctor or nurse will have ever heard of them. Thats why patient groups work well as we do pay attention to all the details to be well.
Ask GP if they will test your antibodies. The NHS only test one type - TPO but privately there is also a test for Tg available. Its useful to know regarding diet and trialling gluten free, sometimes also dairy free but wont change how you are treated otherwise.
About tinnitus, sometimes it just 'is' and it doesn't matter what you change it comes and goes.
"The trouble with a low starting dose of Levo is that it replaces your own hormone production, it doesn't top it up, so you can be left worse off in the initial stages of treatment if its less than what you were originally producing.
That may be the problem with the worsening tinnitus but once you get to higher doses it should improve"
This made me feel optimistic about increasing the dose,to alleviate the worsening symptoms of Tinnitus and Anxiety,that i have got since starting on 25mcg
So increasing the Meds may not do anything at all,and could even make these symptoms worse?
I don't want to get off the medication,just to get the tinnitus back to where it was before taking Levo.
Sorry its very confusing for me,as tinnitus has now started affecting me badly since starting the meds.
Was i right to get on Levo with a TSH of 5.4 and T4 of 14.1 in the first place in your opinion?
Tinnitus can be a symptoms of hypothyroidism but can also be caused by a lot of other things. I wouldn't give much credence to what your GP says about symptoms if I were you. They know nothing much about them.
And it's not unusual for symptoms to get worse, or for new symptoms to appear, when you start thyroid hormone replacement - levo. Especially when on too low a dose.
High cholesterol is also a symptom of low thyroid. Don't worry about it. It will drop as your FT3 (active thyroid hormone) rises.
Anxiety, depression, OCD, hair-loss, can all be symptoms of low thyroid, too. The thyroid hormone T3 is needed by every single cell in your body to funciton correctly. If it is low, all sorts of symptoms can occur, things that you wouldn't necessarily associate with your thyroid. So, don't be scared. It's all going to be OK.
But, I would drop that multi-vit if I were you. They are awful things to take for many reasons. What you need to do is get your vit D, vit B12, folate and ferritin tested and just take what you need - with cofactors - we can help you with that. More is never better, and can be dangerous.
I will make sure i let my GP know of all these replies if they do not increase my dosage asap.
They seem to think no treatment needed for sub-clynical hypo,even though my TSH is at 5.4 from 4.5,3 months ago! but it quite obvious the lower you get towards 1 TSH will make you potentially feel better than ever.
Will drop the multi-vitamin also,and ask for vit D, vit B12, folate and ferritin tested.
The TSH itself doesn't make you feel anything, it's just a messanger between the pituitary and the thyroid. What causes symptoms is mainly the thyroid hormone, T3, but also T4.
In order to diagnose as few people with hypo as possible, the NHS has decreed that the TSH should be over ten. They do not like diagnosing people with hypo for political reasons, but also because doctors haven't a clue how to treat it!
But increasing the dosage from 25mcg to bring the TSH down,will in turn help the T3 and T4? (T4 was at 14.1) and make me feel better and should help the worsening tinnitus that starting 25mcg has caused?
Had no readings of T3! Just TSH and T4.
as Jaydee said -
The trouble with a low starting dose of Levo is that it replaces your own hormone production, it doesn't top it up, so you can be left worse off in the initial stages of treatment if its less than what you were originally producing.
That may be the problem with the worsening tinnitus but once you get to higher doses it should improve.
Also why would doctors not like prescribing people under 10,when it is proven to help people feel better? and what political reasons would they have?
But increasing the dosage from 25mcg to bring the TSH down,will in turn help the T3 and T4?
TSH - Thyroid Stimulating Hormone. Obiviously, if you're taking thyroid hormone replacement - levo - there's no point in it trying to stimulate the thyroid, because the thyroid is no-longer working. But, it is a rough indicator of thyroid status, which is why they test it. When T4 and T3 are low, the TSH should be high, and vice versa. The TSH follows the thyroid hormone levels.
So, bringing the TSH down does not 'help' the T4/T3, it's the other way round: raising the T4/T3 lowers the TSH. The TSH is pretty unimportant once you are on thyroid hormone replacement, no matter what doctors think!
Levo is T4, which is basically a storage hormone that doesn't do very much until it is converted into the active hormone, T3. But that takes time. It doesn't happen instantly. I know they don't test FT3, because they don't know anything about it, but it is the most important number.
as Jaydee said...
Yes, that is correct. Starting on too low a dose can cause more problems than it solves. But doctors don't understand that. They have very limited understanding of thyroid.
I read in lots of placed,bringing the TSH down to as close as 1 really helps,and in turn that raises the free t4 reference range.
TSH cannot raise your FT4 level (within the range). It's the rising FT4 that reduces the TSH.
Was i right even to start Levo on TSH 5.4 and T4 14.1
Absolutely, yes, you were. The TSH of someone with no thyroid problems (euthyroid) is around 1. It only goes to 2 if the thyroid is struggling. And when the TSH reaches 3 you are technically hypo.
At 14.1, your FT4 was only 40.00% through the range, which is too low. A euthyroid person would have and FT4 slightly over 50%.
And your TSH was high because your FT4 was low. The TSH was saying to the thyroid 'come on, come on, make more hormone, that's not enough'.
Will increasing it to 50mcg even help
Yes, absolutely. Levo is T4 - levo-thyroxine. So, increasing the amount you're putting into your body will increase the amount that shows up in the blood.
The screenshot below says bring the TSH down makes the T4 elevate.
Well, I'm sorry, but that is not the way it works. It's the other way round. Increasing T4 reduces TSH.
This should then increase T4 levels,and should in turn will reduce my TSH level,and improve my symptoms hopefully.
Yes, it should have a positive impact on your symptoms. But I stress, it won't be the TSH doing that, and possibly not the T4. It will be the T3, which is why it will take time to feel it because it takes time to convert the T4 to T3.
Don't get too hung up on the TSH. It's the FT3 that is the most important.
GPs were only interested in my TSH being high,and said my T4 levels were fine,so said sub-clinical hypo.
Yes, well, that just goes to show how little they know about it all.
What 'sub-clinical' actually means is: blood test results out of range but no symptoms. You had symptoms so it wasn't even sub-clinical no matter what your FT4 level. But because it was still in-range, for them it has to be 'fine'. Another thing they know nothing about is interpreting blood test results. They do not understand that the ranges are too wide, so it's just not possible for results to be 'fine' whether the result is at the top and at the bottom.
Sounds like the Doctors are not clued up enough at all on this matter,which would mean so many people going untreated!
That is absolutely true. But that's the way the NHS wants it. If doctors knew more about how to treat hypos, people might start getting better. And that would not suit Big Pharma who make many small fortunes 'treating' our symptoms as if they were seperate diseases!
I found this article from Yale school of medicine,that popped up on my feed,saying 90% of americans that are prescribed Levo,are incorrectly prescribed it,and don't need it.
Maybe an example of them (pharmas) not wanting people to take it -
Well, the situation in the US is a bit different. It's mostly paid for by insurance, no NHS. It is very, very, very rare in the UK, under the beady eye of Auntie NHS, to be prescribed thyroid hormone replacement when you don't need it. Quite the opposite! A lot of people that do need it are unable to get it. I really can't comment on the US situation, but I take anything that doctors write with a laaaaarge pinch of salt!
Sounds like i was lucky to get prescribed it then,only the 3rd gp agreed to put me on it!I even said i get cold hands,when she went through symptoms,even though i rarely do,to tick more boxes.
Well, it's not just about symptoms, is it. Your TSH was saying that you were hypo, as I explained above. But, yes, you were lucky to find a doctor that didn't insist on the TSH being over 10 like so many of them do!
Another reason they don't like prescribing i guess,is that you get an NHS Medical Exemption card in the UK for Thyroid issues,and get the medicine for free.
And I have never seen any statistics which imply that diagnosing and prescribing rates are lower (or even different) in England to the other nations. Which is what you would expect if "free" prescriptions due to needing thyroid hormones were a factor in prescribing.
I figured,they don't like to give out anything for free,as greygoose,says below.
"If doctors knew more about how to treat hypos, people might start getting better. And that would not suit Big Pharma who make many small fortunes 'treating' our symptoms as if they were seperate diseases!"
I told her of the advice and recommendations i was given by you last week,as well as discussing my worsened tinnitus upon starting on Levo 25mcg,and that it was too low a starting dose,and making my symptoms worse than before starting treatment.
She immediately agreed to let me raise the dosage to 50mcg (i think she thought i was getting advice from Medical Professionals on a Thyroid help chat) and agreed to everything.
She also requested for my next Blood tests in 2 months,i also get tested for -
ferritin, folate, B12 & D3 and Thyroid Peroxidase Antibodies(TPO) as recommended here too.
**Ironically,from last Saturday to before starting on the new dose of 50mcg on Monday Morning,my tinnitus almost subsided from around midday to 10pm each day,which was a bonus,but then was back to normal close to bedtime (both ears,and at its loudest again) until around midday after getting up**
So started the new dose Monday Morning ,and was optimistic i would have near silence throughout the day,as i had the previous 3 days.
But it has been constant and more higher pitched since,more or less,and mostly now in both ears,far worse than before meds and worse than on 25mcg.
I also wake up anxious/nervous feeling,and don’t want to get out of bed.
Is this my body getting used to the new dose?,as it is worrying it has got worse from going from -
No treatment - to 25mcg - to 50mcg
and frustrating that i no longer get near silence throughout the day,as i did the last few days of 25mcg.
Cannot understand how the tinnitus is louder and both ears,and i am feeling worse on 50mcg than 25mcg which was bad enough compared to pre medication.
A lot harder to get to sleep now too.
as was mentioned -
“The trouble with a low starting dose of Levo is that it replaces your own hormone production, it doesn't top it up, so you can be left worse off in the initial stages of treatment if its less than what you were originally producing.”
“That may be the problem with the worsening tinnitus but once you get to higher doses it should improve.”
Congratulations on your big win with the GP! That's great. But, yes, the increase in dose will take a little time to get used to, And it's doubtful that even 50 mcg will be enough. But, we have to increase slowly.
For the tinnitus, I just remembered something I read once but have never got around to trying myself. Maybe you could give it a try and let me know if it works.
Thanks,i will look into the newspaper article,and read up where they are sold in the UK.
I will carry on taking the 50mcg then,as i was tempted to go back to 25 for a few days or even stop for a bit,to have less ringing (would rather be hypo than have bad tinnitus) It gets worse every day.
I don't understand how,if the dosage is probably still too low,that i would be much worse on raising to 50mcg than i was on 25mcg,and in both ears?
It might not even be the hypo or the levo causing the tinnitus, there are so many possible causes. I'm afraid I can't answer your questions, but it's the sort of thing that can happen - things get worse before they get better.
it's just that it's got worse since starting the levo,when it was very mild for around 5 months in just one ear,and straight after starting levo it has got worse,as i go up in doses,which confuses me the most.
It has been pretty quiet since i got out of bed today,and one ear only,so very inconsistant,and reaches its peak at bed time,as is normal for it,as anxiety and thinking about it makes it worse of course.
Anyway i will stick with the meds,and i have ordered some patches.Most are from china,but found a good uk seller who has sold many.
Hopefully the ferritin/iron and other blood tests will show something .
I read Magnesium supplements help some people,so will add them to the high strength B12,D3,Biotin/Zinc i'm already taking.
straight after starting levo it has got worse,as i go up in doses,which confuses me the most.
But you've only had one increase, haven't you? You can hardly see a pattern with just one increase. And it still won't be your optimal dose.
Why are you only taking B12 and biotin? All the Bs work together and need to be kept balanced, so we normally recommend a good B complex with all the Bs.
If you are the same as most people with tinnitus it is always worse when it is quite I have had it in both ears for most of my life in fact I can not remember ever not having it it is the best when I have music playing loud or when flying due to the engine noise, I have not noticed any difference after I started on thyroxine (7 or 8 years ago) I was put on it whilst my doctor was trying to find the cause of my zero energy I think he tried just about everything but in the end I think he gave up as nothing seemed to work even though the blood tests come back in the normal range, I am waiting for a emergency appointment re my heart not working correctly I had a ecg scan which shows that I have a problem but I am still waiting for my emergency appointment which sounds like I still have at least another 2 or 3 months to go I was put on the list in January so I expect to get an appointment for July/August (if I am still alive).Good luck finding a treatment plan, Regards Poppy Ann.
Thanks so much for the reply, and good luck with your treatment also Poppy.
Yes,always worse at night time,and at its best/quietest after waking up.
Can be in 1 ear most of the day,and as soon as bedtime it is both mostly now.
Ear plugs help a bit,as less likely to be awoken and not being able to get back back to sleep.
Will try to increase dose asap,as jaydee says -
"The trouble with a low starting dose of Levo is that it replaces your own hormone production, it doesn't top it up, so you can be left worse off in the initial stages of treatment if its less than what you were originally producing."
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