Hi, I upped my levo dose from 50 to 75mcg on 27.2.25 as I still wasn't feeling great (tired, low mood) and my latest blood results on 21.2.25 were TSH 4.64 (0.27-4.2) T4 13.9 (12-22). Vit D test result 7 March 146.95 (50.1-220) - I supplement 5000iu per day. Nothing has improved, I feel devoid of personality, I've become emotionally unstable and want to cry a lot without real cause. Then two days ago I woke up with compromised hearing in one ear. The pharmacist had a look and there is no wax blockage. I see that hypothyroidism and hearing loss are connected. Any advice appreciated on both the hearing issues and the depression. Have I increased too much? This treatment, ie Levo, which was supposed to help me seems to be doing nothing but bringing me down and, although I have every reason to be happy (and I am at heart a happy, energetic person) I feel I'm losing myself. Thank you.
Levo and hearing issues?: Hi, I upped my levo... - Thyroid UK
Levo and hearing issues?
Everything you're saying above relates to being hypo. You're under-medicated and still hypo. Even 75 mcg is only a small dose, and levo is not going to help you unless you take enough of it.
Unfortunately, we have to go very slowly: starting on a low dose and increasing by small amounts. But going any faster would be countre-productive and you'd end up back where you started. Patience is the key. Nothing happens rapidly with hormones. 
Retest thyroid levels just before or just after Easter
Likely ready for next increase to 100mcg by then
Very helpful profile
Have note added to all future prescriptions “no Teva”
Which brand levothyroxine are you currently taking
Thanks for your response. I'm taking Almus/Accord and have a note on my records/prescription "Almus only". They don't supply 25mcg so I'm cutting 50s in half. The doctor is yet to approve my dose increase and I will run out before the next script is available. I have an appointment in 2 weeks time which is cutting it fine. I've diarised 10 April to retest which will be 6 weeks since increasing dose. Have you come across hearing loss? The internet says levo can cause it. I hope it is temporary. Thanks again.
SD can that be true that T4 can cause hearing problems, I would be very interested
Re hearing loss. Before being diagnosed I became severely hypothyroid (TSH nearly 200) and one symptom ( of many) was hearing loss. I had to keep asking people to repeat themselves and come closer so I could hear them. It was awful. Once treated it resolved thank goodness. I would say your hearing loss is more likely due to not being adequately treated yet rather than side effect of tablets.
Have you come across hearing loss?
Being hypo can cause (temporary) hearing loss …..sounds like you have cotton wool in your ears
I wonder whether I should reduce my dose either to 62.5 or back to 50. I wasn't feeling 100% on 50 but can barely function after 3 1/2 weeks on 75, and the hearing loss has crept in on the higher dose. It seems I'm much much worse on 75 despite the numbers. By much worse, I mean staying in bed and cannot stop myself from crying much of the time. I just want to add THIS IS NOT ME! I've always been a strong person.
As others have said, the 75mcg is the most difficult dose to cope with
It’s enough to virtually shut your own thyroid output down, but not enough to offer full support
You could try splitting the dose
Taking 50mcg in morning and 25mcg at bedtime (or vice versa)
Try to stick with it …..3 and half weeks…..it’s only just beginning to build your level up you will start to see improvements by 5-7 weeks
Retest at 6-8 weeks
Likely ready for next increase by then
Years ago when I started I didn't feel too bad on 50 Levo per day. I hated 75 Levo a day. I felt horrible on that. But started to improve on 100. Eventually I settled on 125mcg Levo a day for quite some time. So I'm afraid it's horrible, but you just have to stick with it and low and slow is the way to go. Increases of 25mcg Levo a day, sometimes we need to cut that pill in half and just take 12.5mcg a day. Wait 8 weeks and then retest. It takes at least 6 weeks for the hormones to level out and for some problems to start being addressed by your body.
Remember you might not look it, but this is an illness. You are sick and must cut yourself some slack. Tell your family how rubbish you feel and that you can't do what you would normally do for them. Rest often. Sleep. And don't push yourself. No amount of gym or exercise will help you, in fact it will make it worse. That all comes back later.
Thank you for your reply. I don't want to upset my husband by letting him know how bad I feel. I don't want anyone to worry about me. Thanks for sharing your experience. Running and fitness is part of what makes me whole and has been my safe place when life has thrown challenges. But I hear what you say and am not doing it, despite my "use it or lose it" belief, especially at my age. You're right, I don't look sick which makes it harder to share how I feel because I feel people will think I'm making a fuss. Each day I wake up hoping I'll have turned a corner. I hope the hearing will resolve. I was gutted to discover this too could be Hypo/Levo related.
You are on a very low dose still. This medication doesn't top up our failing thyroid gland, it shuts it down and takes over. That's fine, because yours wasn't working properly anymore and you TSH was getting higher in order to thrash your thyroid gland into producing moe hormone. That's a hiding to nowhere long term. In the early days you reach a point where it's shutting down but you aren't taking enough to fully resupply your body. But you still have to go slow.
The thyroid is our battery pack and right now not only are your batteries pretty flat, someone has unplugged the charger. I can't imagine going through what you are going through and not telling your husband how you feel. That's not a good plan. It can take many months to get this right, you will need his help and support. You can't help how it makes you feel and what to stops you doing. You just have to keep going. For your own sake, please tell him. I tried to hide my disease from family and friends for years (never my husband, he's my rock, I need his support and help). It was a bad idea. The friends got bored and started to think I was just lazy and my mum just ignored my slowing down and continued to keep asking me to do things for her and being a bit critical when I wasn't doing what she thought I should be doing. Not all of us get well on Levothyroxine so my journey is measuring in years not months. But I never give up. I will ride a bike again and do my gardening all by myself. I will be able to go for cross country hikes again. But it takes work.
I will cross everything for you that you are able to achieve full return to health quickly on Levo. Many thousands of people do. Those of us here tend to be here because we have problems and have to try to sort themselves out with help from others who make have gone through similar. But it's a lifelong condition that you have to manage now, don't hide it from your closest supporters.
Hi Fancy Pants I have very recently joined this forum , mainly out of desperation, having read your messages and some similar, I am so glad I have, as you have literally described my current condition. I decided to read your message out aloud to my husband and half way through it I burst into tears as it sounded like I had written it. The long and the short of it, is I have been pretty unwell for the past 22 months having regular tests and scans, seeing various consultants. I am currently being monitored by Cardiology, Neurology and Spinal Orthopaedics. Now Finally having had a recent consultation with a surgeon who specialises in thyroid, I feel that there maybe light at the end of my tunnel.
My symptoms have been endless, however now that I have been prescribed thyroxine I have started seeing some improvement , however I am fully aware that things won't be getting better over night. I was diagnosed with hashimotos disease 28 years ago having had a partial thyroidectomy/ Parathyroidectomy due to a large goitre. For the past 24 years like you I have lived a full and active life swimming, cycling , kayaking and working very hard for the nhs aswell as caring for family members. So I would just like to thank you for posting that message.
*Tge1230 * I tried to conceal my pain , weakness and overwhelming sadness etc from my husband , kids, family and friends. Only to find they were going along with me. They are now all my rocks that are helping me through a pretty rubbish time.
* Fancy Pants* I will also ride my bike again one day and I most certainly will be laughing out loud when I do so 🙃
What a lovely reply. Thank you for taking all the comments on board and talking to your husband about them too. Print them out and stick them in a notebook so that you have easy reference to them for the inevitable wobbles to come on this difficult journey.
We have to really learn about this condition. We can't rely on our doctors. They just aren't good enough.
Please let me encourage you about running! I loved running in my 30s+40s but then life took over - job, kids etc etc. Then time went by+my underactive thyroid was not well managed by GP practice+I looked and felt like Michelin man for so long! Fast forward to my seeing private Endo from Thyroid UKs list, and here I am aged 75 running again!! I mix it with speed walking as I build up my time and it feels so good! She don't give up. Keep getting info+encouragement here+believe you will improve and you will begin to run again - and I am sure that will happen when you are on the correct dose of T4 or T4/T3 combo!! Give yourself time. Be kind to yourself and allow friends+family to be your support, as well as here on this wonderful forum.
Well done Lottyplum . That's wonderful news. And well done you for getting back into it. My aim is to get back on a bike, to walk across the fields again and to get back into my beloved hula hoops. But I currently have terrible neuropathy in my feet and heaviness and pain in my legs so even walking down the garden hurts right now. I'm trying to find answers, but it's very hard.
Have you heard of Dr Eric Berg? He is very good at explaining how different vitamin+minerals impact on different parts of the body, ie if you have certain symptoms it could mean lack of or low specific vitamins or minerals. He discharged sses co factors to a variety of vitamin bs, ie you need your Vit D3/K2 along with magnesium. You may find it helpful to look him up - he can be found on YouTube and Facebook. I do trust you find the help you need.
I've long been aware of and watched his videos, but thank you. He's definitely one of the good ones. My vitamins and minerals have been watched for a long time, I test them twice a year. I struggle to raise them with supplements, but over time it's got better. I suspect my next, imminent, set of iron bloods will be interesting as I had a series of serious nosebleeds in November and lost way too much blood for my liking. I'm on iron (3-Arrows Heme Iron) but I still think it's going to come in low. I take magnesium and Vitamin D3 with K2 (BetterYou spray). I take my magnesium at night though and my D3 spray in the morning.
Check out Gary Brecka - another guy with great info that GPs don't seem to have a clue about to benefit out long term health. Again, he is on Facebook+YouTube. 👍
That's exactly what I am going through, I am in constant pain with my legs and although most days I do manage to accompany my husband on a short dog walk, by the end of the day they sort of seize up. Some days I struggle to get out of bed, because of the weakness. However since changing from nerve pain killers (Pregablin and Notriptyline) to an anti inflammatory (Naproxen) I have seen some improvement. I used to go to bed hoping that I wouldn't wake up the next day as the pain was so unbearable , thankfully that is nt the case now , as the pain is more of a discomfort. My arms were also very weak, I had to support them with pillows, I often wonder now, how on earth I got through those days. My consultants have been very good sending me for various tests, nerve conduction, mri' s , numerous blood tests. They are finding it difficult to get to the root of the cause, as I also have mild spinal stenosis. So here I am in limbo . But the more I read on this forum , the more I am convinced it is my Hashimotos, causing the many issues.Initially I had Blurred vision, had
terrible hair loss, and talked
gibberish.
My lack of concentration prevented me from watching tv, reading a book and listening to music.
I felt like I was in a dense cloud , some days I was nt even sure if I was going to fall asleep and never wake up , but here I still am, taking each day as it comes, improving slowly with the levothyroxine and the helpful advice on this forum.
I know if I go back to the GP about my foot and leg pain, they will suggest I try those unpleasant nerve pain medications. And I don’t want them. I want to find out the cause and fix it. That seems to be very difficult with the NHS in it’s current state.
I understand. I watched my mum be prescribed drug after drug to counteract side effects of drugs she was on until she was on such a cocktail I believe they poisoned her. I also don't want to take more drugs to counteract the effect of the drug that is supposed to be good for me, ie Levo. Best wishes.
That happened to Dad. He had an ice cream tub (large one) full of tablets that he was taking daily. No one ever reviewed any of them with a view to reducing the load. And Mum is also on too many. 3 things to control blood pressure and a beta blocker that I have tried to persuade her to go talk to the GP about but she won't. Even though I had made the appointment for her a week or so ago. She was put on that in hospital after she fractured her pelvis. No one has ever wondered if it is now surplus to requirements.
So far, despite being hypo, having permanent atrial fibrillation and being menopausal, I take hormones for the first and latter and just 3 actual drugs for the arrhythmia. One of those I would like to stop soon. I take supplements as well. But I don't want more medications.
That is so true, I only use them as a last resort. On a good note, I am finding Naproxen is giving me a better quality of life for the time being. I only managed to get prescribed Naproxen after informing my GP that I had read somewhere about Hashimotos causing inflammation in the body, which can cause weakness and pain in limbs. It was then that he decided to let me give anti inflammatories ago.
Unfortunately like tge1230 has mentioned in her post, it can have side affects 😏 like acid reflux, so I was also prescribed 'Omeprasole'. However I have only needed to take it on a couple of occasions, as I make sure I take the Naproxen about half an hour after a meal .
I hope you can find something to help you get through your painful days.
Thank you for replying to my posts, I don't feel so alone in my Hashimotos World. I really appreciate your understanding and advice . Hope you have a pain free day
I can't have regular anti-inflammatories like Ibuprofen because I have atrial fibrillation and take an anticoagulant to protect against stroke risk. Can't take anti- inflammatories with those. It's so annoying, as they do work for me.
That is such a shame, you are so unfortunate. I used to work in the anti coagulant clinic with the patients on Warfarin.. Quite a few of our patients were changed to either apixaban or rivaroxaban which seems to suit most of them much better.
I'm on Apixaban, always have been. Same applies though. No anti-inflammatories. I do take the odd one now and then. They are the only thing that fixes a migraine coming on for me. I had checked with the hospital pharmacist when first diagnosed and she said if I could take 2 every now and then if I ate something at the same time. So I hold it back for emergencies. Couldn't do it every night.
The info for apixaban says anti-inflammatory or pain medicines (e.g., acetylsalicylic acid or naproxen). Especially, if you are older than 75 years and are taking acetylsalicylic acid, you may have an increased chance of bleeding.
But not clear about paracetamol and codeine and things.
Paracetamol are fine. Codine is fine, except it makes me feel like I'm going to die so I can't take it (happens to my mum and also happened to my dad when he was alive. Some are just intolerant to Codine.)
It's just Ibuprofen the doctors tell us we can't have when on anticoagulants.
Goodness you poor thing . I know from our patients how difficult life can be on anti coagulants , they are so easily affected by other medications and foods. Antibiotics seemed to be the worst. It felt like take forever getting the patients back on track after a course. Hats off to you and all those on them.
Thankfully my Migraine s improved after starting beta blockers 4 years ago ( Bisoprolol)
My migraines are much less now than when I was having periods. That was a bind! Actually it's Warfarin that's so easily affected by everything. Apixaban has almost nothing linked to it. No foods to avoid. No medication warnings. But I am just finishing a course of antibiotics and I do think they have knocked me for six. I'm SO tired. Last tablet due at 4pm. I hope to goodness that they have worked.
Thats great that it is working for you . Rest up hope, you are feeling better soon.
Have you any white spots on your finger nails as a lack of zinc can cause hearing loss
Thanks for your response, no white spots.
Hi, as regards the hearing loss, I started with this before I was diagnosed with hypothyroidism, at age 48. However, I believe I was suffering with hypothyroidism at the time the hearing loss was diagnosed. I firmly believe they’re related. I can’t say whether or not the levothyroxine makes it worse. I do feel that my ears are dry and itchy though. I have asked my audiologist if the hearing loss could be a result of the disease, but they just put it down to genetics. I don’t think anyone has researched this.
I totally understand a lot of how you feel and a lot of the time I feel like I’m just going through the motions. I try and tell my husband and family how I feel, but it sounds pathetic even to me. No one really understands what this unseen condition does to you.
I hope you get to where you need to be with your medication and that you feel well enough to do the things you want to do.
Good morningAll of the above is great advice. I will add I have the same in my ears ever since I was diagnosed with hypothyroidism but also it was the same time I was put in medical menopause and there symptoms are very similar. So it's been a long hard road to navigate as I was dealing with various illnesses, anyway 75 is a very small dose and as said you will need a few more weeks to feel if any changes, I upped my dose on 31st Jan from 125mcg per day to 150 and 125 alternative.. It's now end of March and I'm now only just starting to feel some changes, so now I will get my bloods done next month as I feel only then can I get a better result. I hope this helps as time really does matter when we are trying to feel normal. Look up menopause and tinnitus, I am dealing with this as don't sit in silence background white noise helps, if I let it it drives me nuts. I wish you well
I started with tinnitus the day I started levothyroxine. It was too big a dose (100mcg) and ended up in A&E with ischemic irregularity. It felt like syncope, which has not gone away. When I was given Liothyronine, pressure in ears increased like descending in a plane. One day I'll try NDT.
Nowhere else have I read about ears and hypothyroid- this forum is brilliant.
I started with ear problems. Itchy, feeling blocked and tinnitus, which was horrible. All improved with slowly increased dose of levothyroxine. Can I also mention that I suffered from reflux but this manifested as throat and ear problems, so I don't eat after 7pm. All related to thyroid.
Many of us watched The Scottish parliament discussions on the petition lodged by three women. One of the conclusions reached was that if hypothyroidtreatment was unsuccessful the sufferer was in danger of permanent deafness.
I understand. Keep working on it. It took me 2 years to get stable. We'll at least comfortable
hi, was it a pulsing in one ear?
Hi, I wouldn't describe it as pulsing, rather stuffed with cotton wool. Every day I wake up hoping to have a good day but it seems something else gets thrown into the mix. This morning at work my back went. It is confounding that this tablet which was supposed to fix a condition I didn't know I had has made me so Ill, yet I must keep taking it.
Maybe ask for mother brand?
I have had inner ear issues both from being hypo and from Levothyroxine. One thing I don’t see mentioned very often is that levothyroxine is an ototoxic medication. Most people do not have a problem with it but I happen to be one that does. Ototoxic medications can cause hearing loss among other ear issues. A quick google can tell you all about it. I ended up switching to NDT and have not suffered any negative ear impacts. I’m not sure what your situation is but it’s worth looking into.
Thanks, what is NDT?
NDT is natural desiccated thyroid. It’s the treatment made from pig thyroid. In the US you get it with a prescription at the pharmacy. Not sure about the UK. I am a person that cannot tolerate any ototoxic medications. The catch is that being hypo can cause the ear issues also, but specifically it’s the low T3. Levo is a T4 only medication so if you’re not converting T4 to T3 that can also cause ear problems. NDT is high in T3 so it helps with that piece. I have been through the wringer with ear issues and thyroid. I’m sorry you are too.
I couldn't see Levothyroxine on lists of otoxic medications. Could you give the URL of the source you found, thanks 🙏
pmc.ncbi.nlm.nih.gov/articl...
Here’s one. This is mostly about high dose levo. I have a doctor that specializes in ototoxic medications and it’s on the list there. In my experience, the higher the dose and longer you’ve been on it is when the effects happen. I am extremely sensitive so it happened to me fairly quickly on a low dose and some people do well on high doses forever with no problems. Lucky me! (Sarcasm)
ok, from my own experiences....You upped your med on Feb.27, 2025 so thats not all that long ago...I mean you might feel a tad better, but i think at about 8 weeks you would see the improvement if there was one..(a little longer)...Were only at March 22, 2025...Your tsh is still pretty hypo...not off the charts in Canada(where i am), but almost. That reading 4.64 would make me feel empty, and not wanting to do much...I have lost hearing before in my left ear and im hypothyroid, and sometimes get tinnitus..I think though mostly when i was over medicated and maybe my blood pressure was higher...They actually gave me steroids when that happened so i would not permanently lose my hearing..no one checked my blood pressure, but they should have..They even thought i may have had lupus, cause i had a funny ANA, but I dont have lupus...I just think odd stuff with thyroid, Levo and hearing happens..I probably didnt help here, but yup ive had hearing issues and im hypo
Thanks for your response. Did your hearing loss correlate with a higher dose? I'm thinking it can't be a coincidence that my hearing has gone following a dose increase. How long were your periods of hearing loss? Also, what is ANA?
I have just gone through a period of hearing loss in the left ear and a day or two where it was both. I have been getting loss of hearing in the left ear , off and on , for years, even before diagnosed hypo. I believe it is caused by being hypo.
On this occasion, I had dropped T3 by 2.5 mcg the month before and FT4 had dropped 17% and FT3 about 29% as a consequence. I didn't reduce T4 68 mcg. The 68 mcg T4 dose is probably near to what could be a top up for me, or possibly full replacement!!!??
I had it in mind to reduce T3 a further 2.5 mcg depending on blood results , but in light of your post and the replies to it, wonder if the 29% drop in T3 has caused it.
I put olive oil drops in my ear for about 1-2 weeks to soften the ear wax. This is necessary for people to do before getting ears syringed to soften the wax. I wonder, since you say you don't have wax blockage, if hardened wax in the ear might be the problem. I managed to get a small amount of wax from my ear when full of olive oil using my long nails. It looked very old, brown and dirty. That ear has previously been syringed 3 times in the past. Try using a dropper to put olive oil in your ear for a week or two. My hearing is currently back to normal though haven't been able to get warm during the day despite heating on and plenty warm clothing for the past month. I also sense my thyroid currently may be swollen.
Your TSH and FT4 appears to be Central Hypo. I have this problem too. Your TSH looks inappropriate to your FT4.
In my opinion ,a possible root cause of your Central Hypo could be Vit B12 deficiency. The emotional issues etc. could have its roots there as B12 deficiency can affect dopamine and serotonin. See b12oils.com/dopamineparadox.
I don't know what age you are as regards possible menopause or female hormone conditions possibly playing a part.
The website I have quoted basically says that people taking anti depressants ( usually serotonin based) are actually B12 deficient and need to sort that out, as this affects serotonin.
Your post and replies from members have given me food for thought.
Hi, the pharmacist looked in my ears and could clearly see both eardrums, which he said would not be the case if I had wax blockage. I bought some Earcalm, not sure what that's meant to do exactly, but need to be able to say I've tried it when I finally get to see a GP.
Having looked on the internet, I see that being hypo can cause tinnitus/hearing loss and that Levo can actually cure this, but at the same time I see claims that Levo is ototoxic and can cause the same. Very confusing, to state the obvious. Personally, I just hope that this loss is not permanent, and it doesn't fill me with confidence that I'm taking a pill which is actually good for me. It also confuses me that, if Levo is just providing thyroxine which our bodies need, why now am I experiencing hearing loss?! I've never had it before taking Levo and who knows how long I've been subclinically hypo.
What does central hypo mean please?
I'm 56, well into menopause which I had managed without the need for HRT. Whilst I had experienced hot sweats, unreasonable moods and various unwanted states of mind, I was always able to sort it myself, with the help of running, and taking control of my own mindset.
At the risk of heading off on another tangent, at my last appointment I made a flippant comment along the lines of perhaps I should have considered HRT, upon which he wrote me a script for HRT tablets. I had never wanted to take HRT as (a) I seemed to be on top of menopause and (b) I have never ever wanted to take pills to be able to function normally.
I have collected the tablets but haven't taken them (a) because I feel one tablet is better than 2, (b) I figure my body seems to be having enough trouble adapting to Levothyroxine, (c) I will never know what's going on with my body, ie, is it the Levo or HRT which needs tweaking?
B12 result 5.11.24 was 410 (range >178ng/L). Given a range of "more than" it's hard to know whether 410 is OK/good/optimal? What do you think?
Thanks for your response, I'm glad you have found the helpful replies informative too.
Yes, definately up your B12. To work properly you also need all the other B vits. Slow Dragon has plenty of posts explaining this and the importance of Vit D and ferritin too. Some like B12 to be 1000.
If you google Central Hypo there is lots of info, but it is basically a signalling problem where TSH becomes totally unreliable. It is a signalling problem . I am reading some of your previous posts and see you also have antibodies for Hashis autoimmune hypo.
In Central Hypo either or both of the hypothalamus and pituitary can be a problem. I think I have just read that you recently lost your mum. My condolences. Deep grief of that nature, can affect the hypothalamus, which in turn can affect the thyroid. That may be temporary (under range FT4). But you also have antibodies for autoimmune Thyroid disease, which is not temporary.
Thyroid problems and your female hormones are linked but need to be looked at together , and the NHS just hand out HRT without checking female hormones or thyroid. Private menopause clinics look at both at the same time. I would like back on HRT as I checked my estrogen and it is practically non existent, but progesterone is well over range. The NHS would have prescribed both, without checking levels. This would likely alter thyroid levels, yet they will not check thyroid. I think you are right to not take the HRT they have prescribed as you don't know what your female hormone levels are. If all your levels were checked and indicated a need , then I would take HRT. You would likely need to pay a private menopause clinic for this. NHS Menopause Clinic might do what is necessary, but I doubt it.
With the ear thing , I think small hairs, called cilia are involved in hearing. I wonder whether olive oil maybe avoids an over dryness which helps the cilia do their job. This is a personal theory, as I don't actually know.
Edit: my hearing is back without changing the dose I was on where T3 dropped 29%. I had only been on this dose 4 weeks but NHS Endo appointment was the reason for early testing. I had had a covid and flu vaccination 4 weeks before.
To know what is going on with your body and how to help it ,realistically means you follow forum advice and test yourself, and use the collective wisdom of forum members to attempt positive change, I'm afraid.
Thanks again for responding and your condolences, although it was several years ago now that I lost my mum.
In February I checked my oestrogen; all said normal but no explanation offered and I paid it no attention. (Follicle-stimulating hormone was 89.1 IU/L (range 25.8 - 134.8), Oestradiol <18.4 pmol/L (range 0-193), Luteinising Hormone 51.3 IU/L (range 7.7 - 58.5).) I didn't explore this any further as there is enough learning to do in the autoimmune/hypo/levo areas!
Re B vits, when 6 weeks have passed since my Levo increase I intend to carry out a private blood test and will get all vitamins tested then, except Vit D which was done recently and is fine I think, at 146.95 (sufficient range 50-220) although I am supplementing with 5000iu per day and spend lots of time outside.
Am I reading that correctly? Your oestrogen level was less than 18.4 pmol/L? That's on the floor! We need to have levels of 250 minimum to protect against bone loss.
Your GP is poorly educated in HRT if he wrote a script for tablets. Transdermal body identical HRT is the modern way and fully available on the NHS. It has less side effects and much less risk of clot. The only exception is a capsule called Bijuve which is the only body identical oestrogen and progesterone combined HRT available in such a form as yet.
If you are prescribed oestrogen and you still have a womb, you will be prescribed progesterone to protect the womb lining. That's not negotiable.
Now that's odd as my oestrogen is exactly the same as yours at <18.4, which is <3.64% through the range. FancyPants54 My progesterone was 470% through the range and that is over range. What is your progesterone level? I did the test by private blood tests. I had had oestrogen checked by NHS Endo as being < 92. I asked the NHS endo to prescribe oestrogen only, pointing out to him that yes, my oestrogen is <92, but that actually it is <18.4 and I may not have any. Although NHS Endo had checked my oestrogen (they refused my request to check progesterone), he said Endocrinology don't deal with oestrogen( even though they checked it). He asked if I wanted to be referred to the Menopause Clinic (I am 67). I said yes if they deal with it. What he actually did was write to my G.P., not the Menopause clinic ( I expected from that that he was going to refer me on directly). The G.P. wrote to me to make an appointment to discuss menopause symptoms. You are not allowed to mention thyroid if make an appointment for menopause. The G.P. surgery already has a copy of my private female hormone results as I gave them to the G.P. surgery nurse when I asked her for Lenzetto oestrogen spray only. She would have prescribed me oestrogen and progesterone combined as I have a womb. I said I didn't require any progesterone as it is sky high. My blood levels wouldn't have been checked. I pointed out I had a thyroid problem but though HRT would likely affect thyroid levels, thyroid would not have been checked when HRT prescribed, nor after starting it! I had previously been on combined HRT for about 20 years, but due to my age , they removed it just after my thyroid diagnosis, in August 2022. Since she only prescribes combined HRT she told me I was too complex for her and I would need to see a G.P. I said that wouldn't work out for me since they took me off HRT due to my age. The G.P. nurse confirmed that age is no barrier to HRT.
I asked my private Endo to prescribe oestrogen on the basis of my results, but was told to consult a private menopause clinic if NHS waiting lists too long. You couldn't make this up!)
Welcome to the merry-go-round!
Hi there. Did you do a finger-prick test for sex hormones by any chance?
If you got very low oestrogen and very high progesterone post menopause, it could well be an anomaly. During lockdowns, when patients couldn't easily get to the Newson Health Clinics for blood tests when on HRT, they did some experiments on themselves and some patients to see if they could rely on finger-prick test kits that they could then send to their patients for their annual reviews. Turns out those finger-prick tests were very unreliable for sex hormones. Other finger-prick tests seem fine, but they got very erratic results from the sex hormone version.
If possible get a private test done by blood draw. There is no way you would expect to have high progesterone levels if you are not menstruating. The progesterone is released when the egg is released. No egg follicle to burst/no progesterone. There is probably a secondary route to some, as with most hormones, but they would not lead to high levels. I think your test was a false reading and must be redone for comparison.
No one will prescribe you oestrogen only HRT if you have a womb. The progesterone element of HRT keeps the womb lining from thickening. If you really have high progesterone at your age, and you rule out test anomaly with a repeat blood draw test, then it needs to be investigated as it's own "thing".
If your oestrogen is really that low you need some HRT to help you protect your bones and possibly your brain. You need to pursue this further. Sounds like your GPs are not well versed in menopause health. But see if there is a GP at your practice that has an interest in women's health and try them.
You should not have been taken off HRT for age. That's nonsense. And you most certainly can go back onto body identical HRT at any age. For the rest of your life. But first, you need to find out what your current levels are and compare to the High readings you had.
It was a blood draw , not a finger-prick test. Good thinking though. I did a hair mineral analysis at the same time and they flagged up progesterone may be high, testosterone high, and oestrogen low. Progesterone, via "Googling" seems to be related to the adrenals as well as the ovaries. I think it was the zinc/copper ratio this showed up in , where I would be progesterone and testosterone dominant, but have little oestrogen.
Bloods , by venous draw, show testosterone 75.76% through the range, progesterone 470% and oestrogen <3.64%.
Genetically, I have lots of mutations going on which relate to copper. The copper and our hypermobility are linked.
I think , having looked back my notes , the hair analysis was that I was extremely hypo, but due to cellular resistance would have high levels of FT4 and FT3 in my blood tests, making bloods look good, but not actually getting into the cells, which I did. FT4 was 78% and FT3 was 83.78%.
I did a load of blood tests at the same time and the hair analysis agreed with the bloods. e.g. Severe glucose/sugar sensitivity is reflected in the calcium/magnesium ratio. Blood results agreed.
I think the thyroid bit was calcium/potassium ratio.
Overall I was warned I had adrenal fatigue and needed to get gut microbiome sorted.
Per hair sample, severe B12 deficiency as Cobalt undetectable and Manganese 0%. Copper showing as deficient in hair, but not in blood. Copper is complicated in a hair test with the mutations I have, and might not be a deficiency.
It is due to severe functional B12 deficiency that I am Vit B2 deficient (which I am). See b12oils.com . I see from previous posts you are familiar with this site, and that you too have B12 deficiency problems.
One possible reason , per the internet, for high progesterone is ovarian cancer. Two endos and g.p. nurse and likely G.P. have seen these results. No one seems at all concerned!!!!
Your thoughts and observations are much appreciated, and have given me food for thought.
I believe my readings might currently be a bit different from what they were (11/11/24) as I have been able to get some re-growth of pubic hair which had all but gone after being taken off combined HRT, August 2022. I believe this may be due to heavy B2 and liposomal Vit C supplemention, and transdermal B12 (which I see you have also previously used)
In light of what you have said, I may have to bite the bullet and make a G.P. appointment, though they know nothing about thyroid or HRT. My preference , on this journey, is usually to keep a low profile unless absolutely necessary. I know I will get nowhere with the NHS.
We have lots of similar problems:e.g. Hypermobility with horrendous feet problems , sleep/wake cycle. The sleep/wake cycle is something we both seem to find impossible to crack! I am trying. TGE1234 will be even more confused now!
It's unusual to have high testosterone if not supplementing, and if it is high and your oestrogen low, I would expect some to convert to oestrogen for you. It's the normal pathway.
I think you should go see the GP, but say to them what you just said to me, that high levels of progesterone post menopause can be linked to ovarian cancer and you would very much like their help to rule this out. They should be able to do that by blood test I think. So worth asking. I often go and ask for things by saying I want to rule something out rather than a straight "can I have" request that's easy for them to reject.
I have tried B12 injections for over a year now to see if it helps the nerve pain in my feet. The direct answer is "no". Still trying to find out what is causing it. I didn't get on well with the B12 oil, it didn't do anything to raise my levels. They are now off the charts as I have been injecting EOD for a year and now around every 3-4 days. It's become a habit now. I don't think it's doing anything for the nerves, but I'm going to continue with self-injecting and will pull it back to once a week and then if all is well probably move it back week by week so that I inject once a month or slightly more depending how I feel. If you are struggling to get your B12 levels up, I would recommend you try self-injecting . So easy and painless. Might sometimes sting a bit but it's nothing in the grand scheme of things.
The adrenals do make some progesterone and oestrogen for us to help us through later life. But if your adrenals are being flagged as deficient, I can't see why they would put so much effort into over producing such hormones and yet ignoring the oestrogen.
DippyDame is the living fount of knowledge on thyroid hormone resistance at cell level. She may have some advice to add for you on that.
I've just finished a course of antibiotics for sinusitis. The first antibiotics I've had in years. They have made me feel really exhausted. That is not a side effect for them. I suspect they may have affected my thyroid hormone uptake for the worse. Last tablet swallowed at 5pm today. So now I have to rebuild my gut biome. My 3 weeks supply of Chuckling Goat Kefir has arrived this afternoon. I shall be starting on that in the morning. I have a regular supermarket kefir to finish tonight.
Oestrogen is needed for hair growth. I too have regained public hair on HRT, but the hairs on my arms don't reappear unless I am taking T3. No T3 = no little hairs on my arms. Legs haven't been hairy in years.
Keep working at it. We can get there. Others have managed it.
Appreciate your comments, as I really don't understand female hormones at all. I haven't had underarm hair, leg hair or arm hair for years. No sign of it returning despite being on T3! I am surprised that I am managing to get pubic hair regrowth without HRT. I was advised when buying the transdermal oils that low estrogen is normally caused by functional B2 deficiency, which I definately have. I am swallowing B2 as if it is going out of fashion! Severe B12 deficiency , causes the B2 deficiency, I was advised.
With B12 oil and Thorne Basic B my B12 levels 11/11/24 were 995, but competing out any dud B12 can take years .I read up on the Pernicious Anaemia forum about self injecting , but I'm not good with needles at all. There didn't appear to be injectable methylcobalamin or adenosylcobalamin ampoules available unless in the beauty industry , where they seem able to get methylcobalamin ampoules. I know there is methylcobalamin powder and saline available for injection, but this seems a real pfaff. To get adenosylcobalamin, which I definately want, a liquid sublingual seems the only option. I would like to see if a b12 injection felt immediately beneficial.
I take it you are aware that Vit B1 deficiency would cause b12 to be biologically inactive, as well as B2 deficiency, from the b12oils site. B1 is supposed to help nerve pain and regeneration and dosage can be pretty high. It may be a worthwhile experiment to try Authia cream on your feet. This is a B1 cream which also has methylcobalamin, and available in the UK. It stinks though. And take extra B2. The missing link for you for nerve pain in your feet might be B1 which Izabella Wentz is a fan of. I have bought some separate B1 called Benfotiamine. It could be that the usual form of B1 may not work for you, but Benfotiamine might. I think it has a few different names.
Thanks for that information. I do take a B Complex everyday to keep the Bs in balance with the folate and B12 that I take, so hopefully I'm covered there.
My feet have got so much worse since the beginning of the year. Everything has taken a nose dive this year. It's not helped by the swelling in my legs and ankles getting worse. I'm seeing cardiology next week to see if there are problems there that are contributing. That's the next big thing to check because having permanent atrial fibrillation means I'm susceptible to issues there. I used to get a 6 monthly check up at the hospital but during Covid that was a phone call (useless for heart issues) and then the cardiologist retired and the new one, who was bored and yawning the entire way through my one and only face to face with him, signed me off from clinic as lockdown eased and not seen anyone since. I am worried about it. I get breathless just walking now and I'm so tired. Not sure if it's my low thyroid or my heart. Or both!
I take Thorne Basic B which has Thiamine B1 in it. I think most B complexes have Thiamine, B1. It would be worth taking a decent dose of Benfotiamine B1 as well to see if it makes a difference. I do have a mutation that suggests I may need the Benfotiamine. R-5-P , B2 can be ordered from America, but it has dawned on me that the bog standard Riboflavin B2 works for me.
I did a separate post of my own yesterday asking if anyone had a difference in blood pressure arm to arm for the top reading, which can be as much as 57 from time to time. A difference of 30 is considered okay if you have white coat syndrome. There is a possible reason which might be connected to hypermobility. Do you have huge differences that fluctuate , arm to arm?
I think for AF that magnesium might be too high or too low????? Likely too low. I think magnesium regulates the atrioventricular node.
As regards my adrenals when I said "adrenal fatigue" -he may have meant cortisol is too high or too low. I described it to you as fatigue. I need to sort them out, basically.
Hope you can some joy with the cardiologist.
I'm not sure why you think I have hypermobility. I don't know what it is. Everyone has a difference in BP readings one arm to the other.
My atrial fibrillation will be inherited. From Dad. It runs in his side of the family. I take magnesium anyway as most of us lack it.
A long time ago I thought it was you that I answered a post back and forwards with,, about your foot problems, which very much related to a typical hypermobile foot. My alerts don't seem to go back that far when I tried to find the posts. Maybe I have mixed you up with someone else.
I have flexible flat feet which overpronate when I walk. I look as if I have a lovely arch , but my arches collapse when I walk. All but a podiatrist or biomechanics person miss that I actually have flat feet which are unstable . If you look up "too many toes sign" you can check yourself if have this and if it is contributing to your foot problems and ankle swelling.
Many on the forum are hypermobile and this causes problems. Very difficult to get a diagnosis.
It wasn't me. I have good arches when I walk, and I see a foot doctor now and then so I don't have that issue, thank goodness. I used to dance barefoot a lot so I know I'm not flat footed. My mum however is flat as a pancake.
You might have a pes cavus foot then which could cause you problems. That is a highly arched foot. Pes Planus is flat foot. Both conditions cause ankle instability.
Wonder who it was I recommended the "too many toes " test to a while back if it wasn't you.
I go through the "devoid of personality" a lot. This disease is an up and down journey. I don't do the crying. I just go straight to depression. Are you on any kind of antidepressant? Anti-anxiety? If you don't want to go that route, which I have, and regret it (due to the whacka-whacka sound effects in my head and the tinnitus.)
How about trying a GABA supplement for mood?
I just ordered myself a bottle because I need it (Pure Encapsulations brand). I can't even drink caffeine free tea for it will throw me into a heightened state of anxiousness. I take Magnesium Glycinate, too.
Hi, I'm not on antidepressants and, at this stage, wouldn't accept them if offered because I know the Levo is causing it. I do not want to start taking drug after drug to counter the effect of Levo. In the past when I have felt depressed (although never had I been in uncontrollable floods of tears, at work, for two days - unacceptable!) I have got through it with self care - yoga, running. It's like I've just become another person almost overnight. I don't want medication for the hearing loss, again because I know it's due to the Levo. Supplements I'm taking: Vit D/K, magnesium, turmeric, and have ordered B12. I was taking collagen and creatine powder to support my exercise routine but have ditched those for now because what the hell is the point. Whatever life has thrown at me I have been able to deal with in my own way, but now, the Levo seems to have taken complete control of me, taken away my ability to help myself and turned me into someone else. I appreciate your response, and the help and advice of others on here. I have taken the advice on board, stopped exercise, broken down and told my husband. I will hold the line on 75 and hope everything resolves, but honestly I was way better off before taking any Levo at all and it infuriates me that, having started taking it I must not now stop. I wish I'd never started it - it has brought way more problems than it has solved.
I was on Levo or Synthroid, and 5-10 mgs of Liothyronine for years until last year when I put my foot down to my Doc and said to him, 'Let's try Armour!' Maybe you need the T3 as well to put you back into sorts. It takes some tweaking to get to your sweet spot, but it is worth it. I used to play competitive tennis until I got diagnosed in 2013. I doubt I could play as energetically as I used to play, but the Armour really makes a difference in the mood department. Good for you for refusing the antidepressants. There is a side affect that I have from using them: I get a whacka whacka sound effect inside my head and a ticking watch sound in my left ear. The whacka whacka is very hard to explain. Think cheesy, c-rated sci-fi movies with a low budget. The very best of luck to you. Please look into a T3-T4 medication. You won't regret it.
November 2024:
Vitamin B12 level 410 ng/L [> 178.0]
Folate 4.5 [Normal range: above >2.9 ug/L]
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
In-depth article on different forms of B12
perniciousanemia.org/b12/fo...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
perniciousanemia.org/b12/le...
And why aiming to keep B12 over 500 recommended
perniciousanemia.org/b12/le...
Great reply by @humanbean on B12 here
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus B complex popular option.
Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
Post discussing different B complex
healthunlocked.com/thyroidu...
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Thanks SD for this concise advice. I'll get online after work and order some.
Morning symptoms after taking Levo
Levo and gluten free 
Changing from NDT back to Levo
kidney issues with Levo
Levo brands and tinnitus /hearing issues 
