Hair loss help!!!

[Hurtlocker]

I usually have v.thick wavy silver hair glossy with life..since hyper thyroid diagnosis and one year later radioactive iodine theatment and now hypo..hair began to fall out and i had patches with no hair at all and no eyebrows ..started to use kerastase shampoo and conditioner/ hair mask every week and hair is looking good again..on levo 75mic but trying every brand I can to eliminate syptoms of foggy sight/,wobbly legs/unsteady on feet..feels as though I have have had 6 gin and tonics!!! think its additives in tablets...going to try capsules and no additives and fillers/cellulose. Will let you know how it goes..anyone else had this side effect!!!

[SlowDragon Administrator]

75mcg Levothyroxine is only one step up from starter dose.

Low vitamins are common if Thyroid is under treated because gut absorption is often affected

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

add most recent blood test results and ranges if you have them

Ask GP to test vitamin levels

Low ferritin is often linked to hairloss

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get results

[StitchFairy]

I just replied to someone else about wrong thyroid hormone and vitamin levels being a cause of hair loss. Your other drunk like symptoms might well be due to wrong dose of levo too, rather than the actual tablet ingredients. Post your latest thyroid test results so that people can offer suggestions.

[StitchFairy in reply to StitchFairy]

I meant to add that if your thyroid hormones are wrong, no brand of shampoo/conditioner can compensate for that in the long term.

[Hidden]

Your ideal dosage of levo is probably something like 150 but I doubt that ANY dose of levo will ever make you well. But after RAI it is likely you simply do not have a working thyroid at all and therefore should be taking NDT.

Every reason given for the blacklisting of NDT is indefensible and untrue.

[pennyannie]

Hello Hurtlocker

A fully functioning working thyroid would be supporting you, on a daily basis, with approximately 100 T4 + 10 T3.

I just think it makes sense that when there has been a medical intervention of either thyroid surgical removal or thyroid ablation with RAI. both these vital hormones ned to be on the patients prescription for if, and possibly, when needed.

Some people can get by on T4 alone, some people simply stop converting the T4 into T3, which is the hormone the body runs on, and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient.

T4 is a prohormone and your body needs to be able to convert it into the T3 which is the active hormone and I read it is said to be 3-4 times more powerful than the T4.

Living without a fully functioning thyroid is hard enough and as you will have realised by the above, you have, in effect lost that proportion of T3 your thyroid gave you, and that little 10 T3 amount, is said to be about 20% of a one's daily requirement, and been down regulated.

The conversion of T4 into T3, can be compromised if your vitamins and minerals are not optimal. Ferritin, folate, B12 and vitamin D must be strong and solid to support well being.

Graves is an auto immune disease and as such, for life, it's in our blood, and your DNA.

It can be triggered by a sudden shock to the system, like a car accident or unexpected death.

Graves antibodies can sit on and " control " your TSH, like putting your foot down on the car accelerator - these antibodies may well still be in your system and may well be distorting your TSH blood test reading. True there is no thyroid there to stimulate but the anti bodies are still circulating.

You are on a very low dose of T4 and I think this maybe because you are being monitored on only a TSH blood test. It is essential that you are monitored on T3 and T4 blood tests as your TSH is an unreliable marker of anything as you have Graves Disease distorting the TSH.

I had the same problem and only started getting better after coming on here and following the advice for full bloods, vitamins and minerals. It's a massive learning curve, but you can turn things around and be well again, an then, maybe enjoy that gin and tonic rather than walking around in a circle of possible NHS gobbledygook.

Elaine Moore has the disease and went through RAI : she found no help after RAI treatment and so wrote a book Graves Disease a Practical Guide, to help others in the same position. She is a leading medical researcher in the States and now has a website for things Graves for all Graves people world wide. It has an open forum much like this amazing site, respected, and well researched.

Your Thyroid and How to Keep It Healthy is written by a doctor who has hypothyroidism. Dr Barry Durrant - Peatfield writes in an easy to understand manner and we do need to know all about this amazing little gland we have now lost, as we ned to try and compensate accordingly.

I'm with Graves, diagnosed at 56 in 2003, RAI in 2005 and I now have manage Graves, thyroid eye disease and hypothyroidism.

I am now self medicating as I've found little understanding or help with my illness and or symptoms in the current NHS. system.

[Hurtlocker in reply to pennyannie]

Thank you for bothering to write to me...thought I was going nuts or turning into one if those fixated. Wrecks sitting in the doctors every month...believe me I know I am not!!I fully intend to harrass and make sure I get optimum readings soon..my doctor is lovely and she has carried out all vitimin.B12 etc tests plus celiac and all are normal..I have bloods appt and doc appointment w.c 27th abd i intend To ask to try NDT AND SEE HOW IT GOES@!...will let you know outome..feel a bit abandoned by Endo -said he coudnt treat what he couldnt see and would see me in 4 months!!!I am horrified...more support from doctor than Endo...regards

[pennyannie]

NHS know nothing about vitamins and minerals - if you fall in the NHS range you are told you are ok - we need to be optimal in the ranges, not just in them somewhere :-

My ferritin was flagged at 22 - I was in the NHS range was 15 - 300 - so good to go.

Thyroid hormone doesn't work effectively if ferritin is below 70 ????

This also applies to the other vitamins and minerals as detailed by Slow Dragon.

You must ensure your core strength is strong - RAI trashes the immune system :

Very few doctors prescribe NDT - or even know about it : once with T3 and T4 blood test results it will be easier to advise what's the best option - it could simply be increasing your Levothyroxine as your dose does appear very low.

Try not to get stressed about it all as that will exacerbate your Graves, which thrives on stress and anxiety.

[Hurtlocker in reply to pennyannie]

Hi..just need a bit of advice here..have bloods taken usually mid morning after I have taken levo and they always come back perfect in middle of range but still feel dreadful...THIS TIME next Tue I am going to take.meds After bloods.will this give a more accurate reading so Endo CANNOT say he cannot treat what he cannot see!!!,as it will be 24 hours since last meds!!! Your advice would be helpful. Regards

[pennyannie in reply to Hurtlocker]

Hey there,

I didn't see your post from 4 days ago, as you didn't " ping me " in the question, as you have done 4 hours ago.

Ok - you have bloods taken as early in the morning as possible and take your meds after:

Yes you now realise taking your meds and then having a blood tests is not the way to get an accurate picture of your thyroid status as you're only measuring what you have just taken.

Do you have a measure for ferritin ?

If you ask your doctor for the full blood tests as already detailed by @slowdragon above these will give an overview from which considered opinion from the people on here who will work through it for you, and advise accordingly.

This is how I started, I had to pay privately as I had no help from my doctor and once with the information start a new post and include the ranges as well as the actual results.

NDT is very rarely prescribed in the UK.

I think you need to take it one step at a time.

First get the blood tests sorted, either by the doctor or privately, as the results will determine the second step in your recovery.

[Hurtlocker in reply to pennyannie]

Thank you for replying... I shall ask for a print of test results and copy of full blood tests I had done recently..be in touch when I have got them and see where we go from here...i dont understand about pinging my message..do I need to do something to ensure you get it!!!I am naive on thyroid AND mobile phones!!!regards...

[pennyannie in reply to Hurtlocker]

You can't be any worse than me - you did it this time -

basically if you want to reply specifically to a person's post, you need to press the reply button and then they get notified you have written something.

If you reply without hitting the reply in blue - you comments get written but people you thought were reading it, may have gone off reading your message and gone to help, read, some body else's questions.

When the post is " live " and on the same day sort of a thing, people may still be writing and reading and pick you up anyway, but days later people don't look back at posts and if they are not " pinged " to come back, they simply move on to the next person and question.

I hope that makes sense and yes when with your full thyroid panel including the vitamins and minerals start a new post and people better able than me be able to advise what, the next step is.

[Hurtlocker]

Thank god you are there!!!you seem to be very knowledgable about it all...guess you have been through the mill as well..where on earth would I get NDT if the doctor wont supply it! Should I go to Holland and barrett and get some Ferratin if that will help!!you dont know how relievef I am to be able to contact someone with a living brain cell....thankyou..regards