Under and overactive thyroid symptoms - Thyroid UK

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Under and overactive thyroid symptoms

Karen154 profile image
89 Replies

Hi people, over the last four years I gave swung from under to overactive symptoms with balance at all.

I had had part thyroid ectomy 12 yrs back. Would removing one gland cause s imbalance.

With 25ml change of dose I'm freezing cold with painful cold hands and eyebrows fall out.

Increase the dose by 25ml and hands burn hot with some regrowth of brow on side with thyroid gland. No recovery on side with no gland. But scalp and eyelash fall out.

Scalp is bad now. Brows gone. Been to three endocrinologist. Two unsympathetic and only interested in blood test results. Told stories dot swing from under to over. Final consultant didn't know and discharged me. Anyone else the same. I have no quality if lift and I'm ashamed of my hair.

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Karen154
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Karen154 profile image
Karen154

Sorry people my phones playing up. Post meant to read.

Told that symptoms don't swing from one to other.

Endocrinologist don't tell me stories but I do think they have told me porkies or guidance won't allow for diagnosis.

greygoose profile image
greygoose in reply to Karen154

They most certainly do swing from one to the other! And you can have both hypo and hyper symptoms at the same time.

Do you have Hashi's? High antibodies?

Karen154 profile image
Karen154 in reply to greygoose

Hi, thanks for reply. No I don't have any of those diseases.

Xx

greygoose profile image
greygoose in reply to Karen154

Well, I was only thinking of Hashi's. And it's difficult to prove that you don't have that. But that would be the most logical explanation for having both hypo and hyper symptoms. :)

Karen154 profile image
Karen154 in reply to greygoose

Why is that. I have posted some ranges and the pattern of symptoms further down. Thanks. Xxx

greygoose profile image
greygoose in reply to Karen154

Well, I saw some results, but no ranges, so the results don't mean much. And I didn't see an antibody result.

Antibodies fluctuate, so one negative test proves nothing. But, some Hashi's people never even develop high antibodies. So, lack of antibodies doesn't prove you haven't got it.

Karen154 profile image
Karen154 in reply to greygoose

Had two thyroid antibodies test I don't remember the exact name or ranges at the mo. But one was 1.00 and that was antibodies. The other was p something sorry can't remember but it was 1.8 approx May have lower.

The endocrine said as I had tumours and no autoimmune he was confident I didn't have it now. That was that. I've really dug for answers but get nowhere. Every test is normal. I'm sick of hearing normal.

If you get time will you check out my other post. Female sec hormones and iron. I though there may be a link with drop if estrogen. Sex binding hormone may bring back absorption but I don't think that make symptoms swing back and forth like this.

Many thanks.

Xx

greygoose profile image
greygoose in reply to Karen154

I've had a look at your past post. I don't know much about sex hormones, and can't add anything to what the others have said. Sorry.

Karen154 profile image
Karen154 in reply to greygoose

OK thank you. As I said I'm clutching at straws. Xxx

greygoose profile image
greygoose in reply to Karen154

We all do that. Sometimes straws are all we have.

Karen154 profile image
Karen154 in reply to greygoose

I think it's sad. We shouldn't under this pressure. Trying to treat yourself. It's a disgrace. Xx

greygoose profile image
greygoose in reply to Karen154

It absolutely is. And we never cease to say so. But, the NHS just doesn't care - there's too much money at stake!

Karen154 profile image
Karen154 in reply to greygoose

Not sure if was yourself who posted regarding iron. So many replies now.I know it's not good when iron is low but it isn't the iron as this was happening when was OK. Xxx

greygoose profile image
greygoose in reply to Karen154

Well, maybe, but low iron still isn't good for general health.

Karen154 profile image
Karen154 in reply to greygoose

Hi, wanted to come back to this post. I've tested negative for autoimmune but I do think something related to thyroid is causing change in body temperature. As previously said hands go from burning hot ( loose lashes and scalp hair) to very cold so cold that my finger nails are painful (brow hair and hairline) falls out.

I've tired gluten free for a few weeks. The pins and needles in lashes and scalp seems to have subsided body temperature more stable but it's still there and hair still shedding.

I was wondering if hair grows back with automatic disease or if it would show up in blood tests if there is no sign of inflammation at all the time of tests.

Thanks

greygoose profile image
greygoose in reply to Karen154

As I've said above, you cannot rule out Hashi's for several reasons, and don't trust anybody that says you definitely don't have it, because you probably do.

I was wondering if hair grows back with automatic disease or if it would show up in blood tests if there is no sign of inflammation at all the time of tests.

Not quite sure what you're asking, there, but hair will usually regrow if you eliminate the cause of it falling out. If the cause was low T3, then it should regrow when you raise your T3. If it was due to low iron, it should regrow when you raise your ferritin. I don't think it has much to do with the autoimmune side.

Would what show up in a blood test? Antibodies? Yes, they would, if they're there, it doesn't depend on inflammation. But, as I said, antibodies fluctuate, and also there are two types of Hashi's antibodies - TPO and Tg - most doctors only test TPO. But your Tg ab could be high. Also, you can have Hashi's without having high antibodies, so you can't prove you don't have it.

Did you get anything else tested at the same time as the antibodies?

Karen154 profile image
Karen154 in reply to greygoose

Hi thanks for your reply. I'm a tad confused as I thought autoimmune was Hashi's. The lab did both tests and they were well under Range.

Also did t4,T3 tsh. Iron. My iron dropped very low. Back on the liquid iron and scalp fall has improved but it's still falling.

Also taking a small dose of T3 so I'm the high Range if normal.

It's such a strange thing. When if get hot it's the lashes and all over scalp when I'm cold my hair line recede's and brows fall out. Same thing for four years. I could cry.

Xx

greygoose profile image
greygoose in reply to Karen154

Now you've confused me. Hashi's is autoimmune. Did I say it wasn't?

Stopping hair-lose won't be instantaneous, because the hair that has died will take time to fall, but has to fall for new hair to be able to grow. And it will have been dying at different rates. So, if it's just slowed down, that's a start. I will take time to raise your ferritin levels, but it does sound like that is the cause of your hair-loss. :)

Karen154 profile image
Karen154 in reply to greygoose

Thanks for the ray of hope in your reply but the hair doesn't seem to grow back that's the problem. Would low iron cause your lashes and brows to fall out. It's the change in body temperature as well.

greygoose profile image
greygoose in reply to Karen154

Yes, absolutely. Low iron is terrible for hair. The change in body temperature is probably due to the hypo.

JennaShi profile image
JennaShi

So sorry this is happening to you. Its not right how they are treating you and I can’t imagine how you are feeling. Doctors seem to only want to look at the bloodtests and forget that you are a person and deserve to be treated well.

Have you tried any of the other types of thyroid hormone medicine? Also how is your diet and are you taking any supplements?

Karen154 profile image
Karen154 in reply to JennaShi

Hi thank you for your support. I've tried them all expect natural. I doubt it would be any different.

Always the same outcome.

Take a lot of multi vitamins everything is in normal Range. All vitamins minerals are good. All sex hormones good. Normal testosterone. Not thyroid anti bodies as they are good.

Xx

JennaShi profile image
JennaShi in reply to Karen154

Thats interesting. Do you know what labs they order for your thyroid? If so what do your thyroid labs show? Your symptoms show you are currently underactive at this current time. Also are you taking a t3 medication? I know you said that you swing from hypo to hyper.. is this because of over medication or were you hyper previously and that is why they took a part of your thyroid?

Sorry I am just trying to make sure I understand. Also I do not understand what you mean by antibodies, are you saying you dont have antibodies?

Also you said that your sex hormones are good, what about your adrenals? I have heard that some people are not able to fix thyroid problems until their adrenal issue is resolved. Might he worth looking into if you havent yet.

Karen154 profile image
Karen154 in reply to JennaShi

Hi, my androgen and cortisol is well in normal range. I had non cancerous tumours on one thyroid which was why it was removed. After the op I was underactive. Tsh over 5.00 for 10 years. Staring loosing my hearing and now we're hearing aids and brows starting fall out burning hands until meds wee highered. Then lashes and scalp fell out. Well over 400 per day. Current thyroid is high Range of normal. I'm freezing and brows are falling out. If I higher it I will burn and lashes and scalp will fall again.

Tried T3. Scalp hair falls heavily on it and no regrow of brows or scalp.

Ranges don't matter any more 25 mls and it swings from under to over.

It can be in Range but symptoms are the same.

Xx

JennaShi profile image
JennaShi in reply to Karen154

Wow I’m sorry to hear that. It sounds like you have covered alot of areas. Have you tested for allergies? I know that you had mentioned trying everything but ndt. Maybe something in the synthetic is not working with you? When you say scalp, do you mean hair loss or literal scalp?

Obviously something isnt right do you have stomach problems and or absorption issues? I say this because i take alot of supplements myself and have stomach problems. I found out i have inflammation in my stomach and high parietal cell antibodies but test negative for H. Pylori. All this to say, if you havent checked that out maybe worth looking into “leaky gut,” bacterial and or infection? Or stomach gastritis? Ultimately, reallyfedup is right, it is hard to know without seeing your lab results. Often times people with thyrpid problems have issues with vD, B12, and selenium. Definitely dont give up looking into things and finding a doctor who will help you. This is important and something is obviously going on.

Karen154 profile image
Karen154 in reply to JennaShi

Hi thank you for your support. Yes, we thought it could be allergy and tried liquid thyroid but I had a severe reaction to E219. Turned it's banned in France and used to be in tricky lick. Which you can't get anymore but thus poison has found its way into kids thyroid medicine.

Requested allergy test for E additives but 6 months on no referral. Gp had blocked all orrel meds tho. So they are worried.

Taken Teva for 12 years. Pharmacy can't help. Hair on my scalp is to bad to try anything else now. Needs to recover which it is unlikely to.

Drs stay well away from absorption problems as it could warrant T3 meds so they never get into it. Didn't work for me anyway.

No stomach problems. Did a few bloods on bale level ect and all good. Vitamins all good. Not deficiency.

Bloods go up and down with dosage. But stay normal.

75 mls and can't keep my eyes open, get up or function.

100 mls brows fall and freezing. On this dose now. Few more weeks and I won't be able to function and will need to higher it.

125 mls scalp hair and lashed fall heavily. Brows stop fall out. Burning hands and get irritated.

150 mls burning scalp and eyelashes.

150/175 body temperature cool. Scalp hair and lashes. Bloods well out of range over treated and dangerous at this stage. No brow regrowth.

Currently cutting 50 ml tablet into four. Taking 112 mls.

Slight brow growth, freezing cold. Slight lashes and scalp hair fall.

Forgot to say. Hearing in side with no thyroid is very poor. I don't know I'm being spoken to.

I'm only 46.

Xxx

Karen154 profile image
Karen154 in reply to Karen154

Sorry for typos. Should have read orrel meds. X

JennaShi profile image
JennaShi in reply to Karen154

Glad you stopped the liquid one, that is crazy that is allowed! Perhaps there is something common within them all? Have you looked at the ingrediants of the thyroid medications that you have taken?

So its sounds like somewhere between 112 and 150 lies your possible sweet spot. Thats wonderful that you all your symptoms recorded so you know what works and what doesnt, it helps with time for sure!

And when you say that you have had all vitmains and minerals checked, you have had iron checked correct?

Sometimes when doctors say your stuff is in range, it may not be optimal for you, which is why alot of us request our own labs to do our own research. For example my b12 was around 300 but I found out optimal levels are above 500. I’m sire you already lnow all this, I dont know you personally so thats why I am asking.

You mentioned that doctors wont go there about absorption but perhaps they should, these kinds of things are important to know and I hope that you get the lab test you requested. I know its hard to find a new doctor and you do with what you can, however this is your health on the line and thisnis their profession. If they get mad about you pushing for more tests or to see the results thats their problem not yours and you have a right.

And just to clarify you arent auto immune?

Do you have alopecia areata? I dont know how to spell it.

Karen154 profile image
Karen154 in reply to JennaShi

Hi, I'm at optimal thyroid, (but will change in few weeks time). Optimal for vitamins.

It's general thinning and shedding if hair until it gone.

The if my head with the thyroid gland is visible a lot worse the the side with it. If there is an in balance lab tests wk t pick it up.

I've tried with absorption. Drs won't discuss. It's off the record - doesn't exist. This is the UK and we know what it's like. They probably can't diagnosed it anyway.

Ya. The liquid. Day one I vomited with it. Dizzy couldn't lift my head up all day. Scary.

They are pushing for cheap drugs and people are suffering from reactions but I do t think it's this that's causing it.

If it was it would be both sides of my face with hair loss. Sorry I mean. I loose from sides but one side will recover slightly. Alopecia would change body temperature from cold to hot or effect my hearing.

It's differently the thyroid.

Forgot to say. No sign of inflammation in bloods. All very so not fighting infection.

Xxx

Karen154 profile image
Karen154 in reply to Karen154

Should have said lab tests won't pick up an imbalance. Xx

Karen154 profile image
Karen154 in reply to Karen154

Noticed I've missed the odd word out. My apologies. I think it's the phone lol.

There is no balance with dose. If I take 125 lashes and scalp hair will fall. 100 scalp and lashes stop but brows fall out.

I've tried inbetween and there is fall from scalp and lashes. Brow regrowth at inbetween dose is that slight it isn't noticeable or worth the scalp hair falling.

Problem I can't function properly when it's lower and hearing dims.

I'm in a bad place. I'm sure there will be other thyroid patients going through the same.

Forgot to say. I am definitely not autoimmune as both blood tests were far to low.

Xx

JennaShi profile image
JennaShi in reply to Karen154

Are you thinking that having one side of your thyroid missing is causing the effects of your hairloss taking place on that sde more so? Also have you thought about with the freguent changing of your medicine and levels going up and down is causing the hair loss? I have been told this happens when you change medication or doses. Have you had a thyroid ultra sound recently to see if there is anything else on your remaining thyroid?

Karen154 profile image
Karen154 in reply to JennaShi

Hi, ya we cover the frequency of changing dose with the endocrinologist and we tried to keep it stable but what symptoms I'm suffering with the burning and hair fall that it has to be changed.

It is odd that my hearing on that side is bad. And the pattern if scalp, lashes or brows.

I'm in a real mess. I can't see a way forward.

Xx

JennaShi profile image
JennaShi in reply to Karen154

Changing doses sure doesnt help but I can see why you do after you mentioning it previously. I’m sorry I dont lnow anything about hearing problems so I cant comment on that. I do hope that your doctors will allow for more testing because it doesnt seem like you are getting anywhere.

Karen154 profile image
Karen154 in reply to JennaShi

I know. It's awful but I don't know what else they can test for. I check a lot out on Google and take it to them and they will look. But I don't what else they can do now.

Did you say you were tested for allergies. Could you give me more insight into your results please.

I've been on the nhs write and it says.

Underactive if left untreated - hearing loss. Scalp and brows.

Over treated eyelashes and scalp hair temperature.

Endocrine and dermologist ate in agreement that removal of one gland is standard and good practice as the body can produce some hormone.

It hit me thinking. If one side is producing hormone and the others side no, well that's an imbalance.

So surely any move in dose must be over treating the other side. Or under treating it.

They won't accept this. I don't know if it's right. But it's the only thing that could fit.

Xx

Karen154 profile image
Karen154 in reply to Karen154

That should have read nhs website. The phone changed my word xx

JennaShi profile image
JennaShi in reply to Karen154

Do they test for a full thyroid panel? Not just tsh? Maybe more exploring into your theory might help.. not sure what kind of tests unless you get an ultrasound done perhaps? But I wouldnt except this answer, there has got to be some other way of getting you to feel better.

Sure thing, i’d like to point out that everyone is different. For me, I have hashimotos and Graves (according to the endo due to high antibodies). I previously had graves disease and the RAI treatment and it didnt work. A couple years ago went hypo due to stress and tested for both TGab and TPOab as well as TSI (all high). With my allergies, i have quite a few foods that are minimal but from what I understand i am too avoid them becase they cause a auto immune attack.. so supposedly eliminating these foods helps to stop the attack (i do recognise there are many different factors that cause an attack, this is just one factor). i can post pictures and tag you if you would like so that you can see what they test for, not sure that I posted them before.

Karen154 profile image
Karen154 in reply to JennaShi

That would be really good thank you. I'm sorry your going through it. It's such a complex subject I don't think the nhs have the answers. Are you from the UK?

And ya I had the full lab range done. Back when I had the op they tested for tsh. It was years later they tested T4. Only previous few years they tested T3. T3 test off the menu now as nhs don't issue it anymore. Had it done privately. Due to missing tests it's difficult to compare.

But in general. Obviously under treated for 10 years. Tsh 8.00 to 5.00 T4 was 11 to 14. Four years symptoms started with burning and eyebrows, hearing. One Dr highered dose. Burning stopped and lashes stopped falling out. Life was better but no regrow. Then lashes and scalp started falling out and burning again. So chased it with a higher dose. All hair fall stopped and body was cool. But range had gone well over in 12 months. Tsh under 0.01 t4 at about 30 and T3 at 5. So I thought absorption and we reduced dose 25 mls repeat of symptoms. Introduced T3. Tsh. 0.03 T4 18 T3 6.8. Scalp hair fall on T3 terrible so stopped it. Other ranges with dosage change but currently normal. Tsh 0.06 t4 18 T3 approx at 3.00. Scalp lashes stable but I feel awful. Cold and brows again.

Regardless of dose no balance in body temperature now. But at least the scalp is stable for now. But it won't be for long.

I really appreciated how your all trying to help.

Xx

Karen154 profile image
Karen154 in reply to Karen154

Forgot to say it was a n ultrasound scan.

You think primary care and hospitals would do routine surveys on patients symptoms instead if just confusing on blood tests.

They don't seem gather evidence.

Xxx

Karen154 profile image
Karen154 in reply to Karen154

Added the ranges. Ft3 range 3.1 to 6.8 n range by nhs for t3 but think it's the same. T4 11 to 22. Tsh 3.0 to 5.00.

Thanks

JennaShi profile image
JennaShi in reply to Karen154

greygoose Nanaedake SlowDragon not sure if you saw these from all messages but wanted to point them out in case you didnt.

JennaShi profile image
JennaShi in reply to Karen154

Karen154 I tagged you in my allergy test, i hope you got to see it? I am not from the UK, although I agree with you that the NHS dont seem to have answers or really care about their patients. I came to this organization to seek help and learn as well and people here have been very helpful and kind!

Yes it looks like you werent given enough and then way over medicated. You say all your lab levels are fine but I can’t help but wonder about some of your others. To me it looks like an absorption issue, however I am not as experienced as the others who have commented so I have tagged them incase they havent seen this comment that you have posted your results on. Hopefully you will be able to get some answers. I know you said that the doctors wont even go there with you regarding your gut but its all connected. So if there is a way to find another doctor to add to your team (some even do skype or online interaction) (or even ordering your own tests) it might help you get some more information or atleast elminate other possibilities.

In response to your comment below about hospitals doing surveys, i agree it would be nice. Have you seen results from hospital? Have written all of these down in order by date and medication? Might be helpful in future so you can see it all better and easier to access.

Karen154 profile image
Karen154 in reply to JennaShi

Thank you and you have been kind. I'll check it out. I got in touch with an American medical group. I forget the but I'll post it later. It's s very site and Dr stated thyroid, cortisol and sex hormone all need to be treated together. Which makes a lot of sense. Unfortunately they were unable to treat without seeing the patient in person who h I can understand. An absorption problem would fit. Been checking out the posts on Teva which is interesting.

Nhs website states, hearing, hair loss and anaemia are later stages of thyroid disease although I have been receiving treatment.

Xxx

JennaShi profile image
JennaShi in reply to Karen154

Ok I’m glad your looking into these things and sounds like you’re on the right track! Hope you get some answers and start to feel better soon!

Karen154 profile image
Karen154 in reply to JennaShi

Ya, I had the scan last year and then discharged. The remaining gland was fine. He did say it was small but didn't write it on the report. Endocrine said probably took some of the gland from previous op. Said impossible not to touch the other side. Also Bern on same brand expect for liquid which didn't work well. Xx

Nanaedake profile image
Nanaedake in reply to Karen154

Do you always take the same brand of levothyroxine or does the pharmacist swap it to a different brand from time to time? Blood results can swing if you absorb levothyroxines differently or if something is interfering with absorption. Do you always take your levo on an empty stomach and leave at least an hour before eating or drinking anything except for water? Latest NHS advice is to leave 4 hours until eating any dairy product.

Could you get a copy of your historical blood tests and post them here or at least the last few. Make sure results include the laboratory ranges which are needed to interpret them.

You should get your nutrient levels tested, vitamin D, B12, ferritin, folate and if you lost parathyroid glands then get calcium tested too. Thyroid hormone does not seem to work well or at least, you will not feel well if any of these are low.

Karen154 profile image
Karen154 in reply to Nanaedake

Hi. Thanks for reply. Could you check out my answer to previous post please as very similar.

I take Levo at 6.00. Then boiled water till 9.00. Eat at 11.00.

All vitamins are good. Mus to high Range.

Side the thyroid gland was taken out off - hearing is bad. Lashes and brows don't recover.

Scalp hair doesn't recover at all. Tried minoxidil. Oils, message. Collagen, vitamins.

I couldn't possibly go over all blood ranges as they change with dosage. They only move slightly and are ok.

Thanks

Karen154 profile image
Karen154 in reply to Karen154

Forgot to say calcium zinc ect all good in range. Xxx

Nanaedake profile image
Nanaedake in reply to Karen154

When you say you drink boiled water, do you mean you drink hot water or that you drink previously boiled water which has been cooled to room temperature? The reason I ask is because levothyroxine is affected by heat. If you take the tablets with hot water it is likely to affect its potency.

Karen154 profile image
Karen154 in reply to Nanaedake

Oh right I didn't know that. Maybe I should start taking it of a night.

Do you think this would keep me awake. I drink it hot or warm. Can't stand my day on cold water.

Xxx

Nanaedake profile image
Nanaedake in reply to Karen154

Well you only need to leave an hour after taking levothyroxine before drinking other things apart from cold water so you don't have to spoil your day. One of the findings in the review of levothyroxine by the MHRA was that levothyroxine degraded if heat was generated in the factory processes. I presume the effect of hot water on the tablets may be similar.

I don't think that taking levothyroxine at night will keep you awake as it has a long half life and affects the cells slowly. You could simply try it and see.

Karen154 profile image
Karen154 in reply to Nanaedake

I do take it with cold-water then sleep for an hr. But may try that. I have always taken Teva. Expect for the liquid which didn't work well. That's in an earlier post.

Xx

Nanaedake profile image
Nanaedake in reply to Karen154

People have had terrible problems with TEVA levothyroxine. If it were me, I would try a different formulation of levothyroxine just in case. The UK has Actavis, Wockhardt and Mercury Pharma available. Wockhardt has the least amount of fillers apparently and Actavis has been around for a long time.

If you find out changing brand makes a difference then please let us know and make a yellow card report. It will probably take a few months until you start feeling better and it might take a year to get back on track if it turns out it's the levothyroxine that is causing the problems.

Karen154 profile image
Karen154 in reply to Nanaedake

I certainly will. Many thanks.

Karen154 profile image
Karen154 in reply to Nanaedake

Hi, want to update the post regarding medicine. Switched to Asos T4 made no difference. Exactly the same so it's not the brand of T4 causing the problem.

Trying gluten free diet and body has been more stable but it is still there and hair still falling out. So fed up with it all.

Thanks

Karen154 profile image
Karen154 in reply to Nanaedake

This is very true and I used to be different in a few last year but everything is really good in Range now and has been for bout 9 months. But the pattern if hair loss and swinging from cold to burning is always the same.

I thought it could be the menopause effecting my thyroid but again it wouldn't effect the pattern if hair loss or burning to freezing. Again sec hormones are very good and testosterone is low normal.

Xx

Nanaedake profile image
Nanaedake in reply to Karen154

You don't say whether you always take the same levothyroxine in your last post or whether the pharmacy changes the type of levothyroxine you take when your dose is altered. Also, what type of levothyroxine are you taking now? The fillers in tablets may cause a difference in response and possibly symptoms.

If menopausal then you need to increase your nutritional calcium intake even if your calcium results are fine. At menopause, a fall in eostrogen means you don't absorb calcium from foods so well. Low calcium intake may cause a range of symptoms. Ensure you eat calcium rich foods with each meal.

Karen154 profile image
Karen154 in reply to Nanaedake

Ya, I'm with you on that. But the bloods aren't menopausal. I think there must have been s drop at my age. Not having menopause symptoms that I'm aware of.

But I've order progesterone and estrogen bio identical cream from the states. I'm just grasping at straws really.

I take vitabiitic perfectil Max. Which is expensive but has everything in it. Plus collagen supplement. Previously tried cortisol supplement but no real change although felt brighter. Stopped taking it as didn't want that to go over.

Good knows. I give up. Just no quality to life. Fatigued it irritated. Freezing it burning. I can't stand watching my hair fall out. Xxx

Nanaedake profile image
Nanaedake in reply to Karen154

You say you take a lot of multivitamins. What do your multivitamins contain? It's not recommended on this forum to take multivitamins as they often contain iodine, biotin or iron. Iodine can hinder thyroid performance and iron will prevent absorption of other vitamins. Biotin affects thyroid test results.

Karen154 profile image
Karen154 in reply to Nanaedake

Wow I didn't know that. I was taking biotin. It helped with shedding of hair loss. I thought iodine was good for thyroid. It's the cause of goitre. Which I had with the tumours. I ordered some but haven't taken it. Xx

Karen154 profile image
Karen154 in reply to Karen154

Have to say though my nails and skin have been amazing since taking perfectil Max. They are usual weak and dry skin.

Xx

Nanaedake profile image
Nanaedake in reply to Karen154

Nails might improve with more calcium rich foods and consider zinc too. Selenium may also help. What are your vitamin D levels like? If taking vitamin D3 then you could add K2-MK3 and magnesium which are co-factors. All of these separately may be helpful.

Zinc recommended doses

webmd.com/vitamins-suppleme...

Magnesium

naturalnews.com/046401_magn...

Selenium daily allowance recommendations

webmd.com/a-to-z-guides/sup...

Selenium Research NCBI

ncbi.nlm.nih.gov/pmc/articl...

Selenium information

ods.od.nih.gov/factsheets/S...

Bone Health vitamins needed

betterbones.com/wp-content/...

Boron - Prunes contain boron

ncbi.nlm.nih.gov/pmc/articl...

Generally, people on this forum say that ferritin needs to be mid-lab-range for hair re-growth. Do you know what your ferritin level is?

I think your hearing loss is likely to be separate from your thyroid condition. I don't think it's commonly associated with thyroid conditions when they are treated with thyroid hormone replacement. I could be wrong though.

Karen154 profile image
Karen154 in reply to Nanaedake

Thanks for all your very good advise. My zinc was low normal so took two daily dose of that for a month. Nhs won't test selenium but take daily dose of that. Magnesium was high normal so left that one alone. Vitamin D is high normal B13 mid normal and take a daily dose.

If I stop any of the supplements very thing drops to nothing.

The hair fall pattern and body temperature is only with the thyroid medicine. Nothing else alters it. It's just consistent.

Xxx

Nanaedake profile image
Nanaedake in reply to Karen154

If you are not absorbing nutrients from your diet and have to keep supplementing then you need to investigate causes of lack of absorption. Could you post your vitamin levels along with lab ranges please? It will help us to consider what might be going on. Have you had thyroid antibodies tested too? If so, post those along with latest thyroid test results.

Karen154 profile image
Karen154 in reply to Nanaedake

Hi, As I said as soon as I talk absorption to Drs they cut me off. All of them have done this.

I've been discharged so there will be no investigate into anything.

I'll post the vitamins in the morning. All I have to go is the pattern it follows. Would absorption problem follow that pattern? Could be multiple issues. But the nhs doesn't have the resources to find out and they don't acknowledge private bloods. They can't be upfront and tell me. Prefer to play stupid which really annoys me.

I'm avoiding tests now as had that many done starting with problems in fold if my arm. More veins bleed more likely they are to collapse.

Anyway I did an earlier post about female sex hormone and iron. If touchable time to take at look at that is appreciate it.

Night and thanks again. Xxx

Nanaedake profile image
Nanaedake in reply to Karen154

If you take biotin, stop taking it at least a week before your thyroid blood tests or it may affect the test results.

Vitabiitic perfectil Max that you are taking contains biotin and iodine. You don't want to take iodine. You are taking levothyroxine so you don't need iodine and it may interfere with remaining thyroid function. Your multivitamin contains selenium and zinc, omega 3 and vitamin C which are good but you could take selenium, zinc, omega 3 and vitamin C separately rather than taking a multivitamin.

You need to have ferritin, folate and vitamin B12 tested to find out whether you need to supplement.

SlowDragon profile image
SlowDragonAdministrator

You say you have always taken Teva Levothyroxine

This may be causing an issue

Many, many people do not get on with Teva

healthunlocked.com/search/p...

If not lactose intolerant, suggest you try a different brand

Multivitamins are not usually recommended on here. Most contain iodine which should be avoided

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Recommend full private testing 6-8 weeks after changing brands

Very important to test vitamin D, folate, ferritin and B12

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Essential to test FT3.

It is possible to get T3 on NHS

Testing for DIO2 gene variation can help if you turn out to need T3

thyroiduk.org.uk/tuk/testin...

But, unless lactose intolerant, Teva is best avoided

Karen154 profile image
Karen154 in reply to SlowDragon

Hi, I asked the chemist. Who said brands change all the time they weren't very good. Could you suggest a different brand please. Also would intolerance follow this pattern if hair loss.

It's either brows or lashes and scalp. It's not happening together. I've also tried combination drug of T4/T3 from Europe but the pattern is always the same.

I'll post the ranged in a moment and get back. But I don't use ranges anymore and go by what I feel. It various with a shift of dose and not where I am in a range. If you get what I mean as obvious bloods change with dose.

Thanks

Xc

Karen154 profile image
Karen154 in reply to SlowDragon

Hi, I've read one post about Teva. My hearing problem started after 2015. Think the problems started a bit before they changed the compound. I was loading brow hair before this but the date would like fit.

My endocrinologist write to the GP Teva in brackets. But hasn't talked to me about it.

This what annoys me so much. They think they knows what's wrong but do nothing.

Xxx

Karen154 profile image
Karen154 in reply to SlowDragon

Hi, I've updated the blood ranges higher up. Where talking about dosage.

Xx

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

Suggest you change brand and get full Thyroid and vitamin testing 6-8 weeks later

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Essential to get and keep vitamin levels optimal by testing regularly

Aurora64 profile image
Aurora64

Hi Karen, Haemochromatosis or iron overload can cause hair to fall out and also hearing loss. I had hair loss, burning muscle pain, extreme fatigue, pain in hands when I wake up, etc. after taking an iron supplement (on Drs advice) when my ferratin levels were low, funny thought my iron levels were normal. I was also taking vitamin d, magnesium and selenium. Iron poisoning was from adding more vitamin c which increased iron absorption and changing my brand of pill (skipped a period when I switched).

I've also had a hemithyroidectomy and am taking thyroxine. Good luck 🙂

Karen154 profile image
Karen154

Hi this is really good information. My iron is low at the moment. 9.4 range 10.00 to 33.00. Ferritin 83. Range 10. To 291. Started liquid iron. Dr said said white/red cells are good. But that was last year when iron was OK.

Xc

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

You can't utilise thyroid hormones with iron that low

You need optimal levels of folate, B12 and vitamin D too

Document listing all available brands of Levothyroxine in Uk

thyroiduk.org.uk/tuk/treatm...

You just have to try one brand and see how you get on. Retesting thyroid levels after 6-8 weeks

Ask you pharmacy which brands they usually stock. Not all brands come in 25mcg tablets either.

I only use Mercury Pharma, but not very easy to get. I have to go 10 miles to helpful independent pharmacy.

Karen154 profile image
Karen154 in reply to SlowDragon

That's awful you have to travel that far for your prescription. But guess it must be well worth it. Xx

Karen154 profile image
Karen154 in reply to SlowDragon

Have you tried an online pharmacy and see if they can deliver. Xx

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

They don't guarantee brand online.

Fortunately, after much searching, found a pharmacist who understands brand MUST remain constant.

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

Eating liver or liver pate once a week should help improve iron too

JennaShi profile image
JennaShi in reply to Karen154

Have you figured out why your iron is low? Mine was due to heavy periods and absorption issues

Karen154 profile image
Karen154 in reply to JennaShi

No idea why it's low. I was taking supplements last year and it was ok. The Dr then stopped the supplement and dropped really low. My periods have been light for a few years and quite late now. I thought it could be due to over treatment of Levo. But wouldn't know. Xxx

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

Extremely common to be gluten intolerant due to low stomach acid and leaky gut

As Nanaedake says, if you have actual results and ranges for vitamin D, folate, B12 and ferritin put them on a new post

Plus say exactly what supplements you are taking

Karen154 profile image
Karen154 in reply to SlowDragon

Hi, can you give me some examples of gluten intolerance please. Other then low vitamins.

I take vitamin D 2000ml once a wk

Collagen capsule Max dosage which also contains daily dose of zinc, Vit E,A,C.

Found vitamin E helped with scalp hair.

Multi vitamin B complex twice a day. That stewed my B12 to mid range normal.

Omega 3,6,9 in one capsule once a day. This really helps with cholesterol.

I tell you I'm sick of popping pills lol. Was using a cortisol supplement but have discontinued that.

Xx

Karen154 profile image
Karen154 in reply to Karen154

Recently bought a multi vitamin but taking that in routine until others pills have finished.

Nanaedake profile image
Nanaedake in reply to Karen154

This is really confusing because you said all your vitamins were good higher up in your messages but now you say your iron is low. I think you need to post all your latest blood test results for thyroid and vitamins. We need all the information to give you good advice. It's really difficult when it's incoherent, I know we all get brain fog though.

Karen154 profile image
Karen154 in reply to Nanaedake

Hi, my vitamins are all good. Their mid to high Range range normal. I take a lot of supplements to maintain a good level. Xx

Karen154 profile image
Karen154 in reply to Nanaedake

Dr removed my iron supplement so that has dropped. The rest I take independently. However I did say in an earlier post that they used to be low before supplementing.

Therefore I know it isn't deficiency that causing the problems.

When my iron was good last year the same pattern of hair loss was occurring.

It really doesn't matter what I supplement it's the dose of drug that makes the difference.

It is interesting that a of people are having bad with reaction to Teva.

There could be something in this.

Nanaedake profile image
Nanaedake in reply to Karen154

If the type of levothyroxine (or the fillers in it) is causing a problem then no matter how much you keep adjusting levo you will continue to have symptoms of one kind or another. The levo may be preventing you from absorbing nutrients from your food properly or it could be coeliac disease or gluten intolerance as SlowDragon has said. If you haven't got antibodies and your levothyroxine dose is adequate then you shouldn't really need to take lots of supplements to maintain good levels unless your diet is rubbish of course. I can't remember now whether you said you had antibodies or not? Something isn't quite right is it?

Karen154 profile image
Karen154 in reply to Nanaedake

The Dr did test for autoimmune. I'll have to look it up on the new app.

I'm not perfect with food but I do eat heavy. Steaks veg tuna eggs ect. I try to eat good protein. If I stop the supplements everything will drop to nothing.

Everything seemed to start at the same time at age 42 and has just gets worse.

Weigh gain, hair, hearing. Deficiency.

Xxx

Karen154 profile image
Karen154 in reply to Karen154

Lol that should have read o eat healthy.

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