Me again, sorry to be a pest (I dont have thyroid issue)

I've posted before about my constant hair shedding, that includes a receding hairline and constant, progressive thinning. I have a family history of underactive thyroid, which is why I keep coming on here. Ive had my TSH checked (1.88) and told all is normal.

I was told I have low testosterone by 2 GPs (my level was 0.4 but I wasnt given reference range). The 2nd GP who tested me wrote to the endocrine dept and received a letter back saying that isn't low T and its normal for me (I was previously at 0.7, so its almost halfed).

I also tested positive for ANA's last year on 3 separate occasions (June, August and December), was sent to a rheumatologist and then discharged.

I am at my wits end, a very close relative has recently told me I look tired and drawn. I'm 30 and just dont feel like myself. Nobody is taking my hair shedding seriously. I have been given high dose Vitamin D finally (40,000iu a week for 7 week's, have taken 4 weeks worth) after being diagnosed with a deficiency in December and I've been given iron 210mg to take 3 times a day (I sometimes only take in twice a day as it is making me constipated) as I had low iron but no deficiency or anaemia (even though a GP did tell me I was slightly anaemic in September).

Is there anyway this could be thyroid related? Should I insist on a full thyroid panel? Is it worth taking a relative with me? I can't stand watching my hair get thinner and thinner and thinner and also my body feeling weak and sometimes shaky. I don't have typical thyroid signs such as weight gain and extreme fatigue, but the 3 relatives who have an underactive thyroid never had weight issues either, one is my father who can eat for England and is slim.

I can't afford to go private although I really wish I could as I know something isn't right with my body, I just have no clue what it could be.

This is probably the 3rd time I've posted here now so apologies, I just feel so angry with the doctors. I've been asked about emotional stress, been told my hair dye could cause hair loss (I've dyed my hair 3 times since 2013), they've even asked how old my child is (12) and said oh so you're past the sleepless night stage. I know something isn't right.

[Essexmum]

Hi, I'm sorry you are feeling so unwell and hope some knowledgeable people on here can help you.

If your family have a history of underactive thyroid with no weight gain, which I have heard can happen, I would suggest you ask for thyroid tests.

Before I became hypothyroid, I was losing handfuls of hair when I washed it. This stopped after I went on to medication which by this time I was 2 stone heavier! Since being treated and being hypothyroid for a number of years, I still have a great deal of shedding, growth seems slow and my hair is dry no matter which products I use. I take selenium which I feel has helped with the thickness of my hair. I have always dyed my hair as mine grew through white from an early age and while I can only explain what happened to me, my point is I would push for further tests.

You know when your body is not right so ask for those tests.

Good luck and hope you find the answer.

[Hidden in reply to Essexmum]

Thank you very much for replying. My mother has offered to come with me to the doctors and I may take her up on this offer. I'm sick of being ignored.

[Cooper27]

There's a thing called central hypo, where you can have below range T4 and T3 levels, and still have a TSH in range, so I do think it's worth getting a full thyroid profile.

Can you afford a private test at all? You can get TSH, T4 and T3 tested for £39 with Medichecks), and I can share a code with you so you can get 20% off (so the test would be £31).

[SilverAvocado in reply to Cooper27]

There is also a Thyroid Thursday sale on Medichecks where they discount one of the test packs.

I think for Tuesday88 getting full thyroid testing is the only way they will fully get to the bottom of this. The minimum is a package of TSH, freeT4, freeT3. That will be able to pick up central hypothyroid, and be the cheapest option.

It would also be good to see anti thyroid peroxidase and anti thyroglobulin, as these could pick up autoimmune thyroiditis (Hashimotos) even if it's not yet visible in hormone levels.

If finances can stretch to it, get vitsmins as well, particularly as there have been deficiencies: folate, ferritin, vit D and vit B12.

Medichecks have packages for all of these combinations. These are mailorder finger prick blood tests you do at home. Take it early in the morning before food. We're mentioning Medichecks because its the cheapest, there is also Bluehorizon and a few others. ThyroidUK website has more info.

[Hidden in reply to SilverAvocado]

Thank you for replying. I will get the one with antibodies. Is that discount available every single Thursday? I have looked at the tests and the one I am thinking about is £59. Money is very tight at the moment but I would lend the money as I'm desperate for answers. I cant shake the possibility of my hair loss being thyroid related due to my family history and also the fact I do struggle with hot and cold temperatures, I feel weak a lot and did have low (but within range) ferritin and folate last year. I have been told thyroid issues can cause low vitamins. I also have loss of sensitivity in certain patches of my body, not sure if this is relevant but if I scratch certain parts if my legs or back it's not as sensitive as other parts. Also when I drink cold drinks I can only feel the cold in one side of my throat (doctor claims this is all normal and is only an issue if it was complete numbness).

I'm sorry for ranting on, but I really want answers and if its even a tiny possibility this could be thyroid related I think I'm going to swallow my pride and ask a relative to lend me some money.

[SilverAvocado in reply to Hidden]

Tuesday88, I'm not a big user of Thyroid Thursday so I'm not sure. But I think what happens is that each Thursday they discount SOME of the thyroid packages, so if you want a specific package you may have to wait a few Thursdays and keep looking.

There are also discount codes available for undiscounted packs. I think the ThyroidUK page about testing will usually have the code in a little picture, or if not you may be able to pick one up by browsing the forum as people sometimes make posts with codes when they come out. I don't know how these compare to the size of the Thyroid Thursday discount, but I'm sure you can figure it out quite easily in two days time!

Good luck, I hope you find some answers.

[Hidden in reply to SilverAvocado]

Ah I see. I will keep an eye out then will take me a few days to pluck courage to ask relative for money anyway so I'll be looking at next Thursday at the earliest. Thanks a lot for responding

[Cooper27 in reply to Hidden]

I generally find Medichecks only have about 20% off on thyroid Thursday's anyway, so either way you would get the test for £47 instead. I'll PM the code (I don't gain from sharing it, it's a discount code I get via my gym, but I'm not meant to share it publicly).

[Hidden in reply to Cooper27]

Thanks so much. £47 doesn't sound so bad for potentially finding out why my hair wont stop shedding so much

[Hidden in reply to Cooper27]

I am seriously thinking of asking a relative to loan me some money, I suppose even if the test comes back completely normal its money well spent as then I can put to bed the possibility that my hair loss and weakness is thyroid related. How long is that 20% off code valid? I'm thinking of getting the test with the antibodies included too.

Thanks for replying.

[SilverAvocado in reply to Hidden]

I agree with you, a test showing you are all fine is almost as good as finding the source of the problem, because it crosses something off the list and gives you some data.

[Lora7]

My first sign of my thyroid disease was hair shedding. This has absolutely destroyed my self confidence and I now have hair extensions. One thing I will say is that when I had remission from this for 4 years my hair grew back to how it was before. Unfortunately it has now returned and I have now been losing hair for 3 years I will never be completely bald (I hope) but I have thin hair at the temples and a receding hairline. I do know that if you can get your levels right your hair will stop falling out. I am lucky because I had extremely thick hair to start with so I just look like a women with thin hair now. I can honestly say my hair loss has broken my heart which sounds vain but it was the only good feature I had and people always admired my hair. As my Doctor said "It's only hair for goodness sake" I looked at his bald head and thought "yes it is but you would look better with hair than without Mr Baldy!" I think hair loss is extremely devastating for women and for some men. I hope you find out what is causing yours.

[Hidden in reply to Lora7]

It does not sound vain to me as I am in exactly the same boat. People used to always comment on my hair and it is still extremely long, but very thin and now endy looking. I too had very thick hair even until January of this year after months of shedding, but now my hair is thin and I'm terrified it will just keep getting worse. It feels horrible and you can now see my scalp at the front part of my hair. If my GP said that I'd be furious.

Thanks for taking time to reply.

[Lora7 in reply to Hidden]

I was furious with him so I decided to see a lady Doctor hoping she would be more sympathetic but no, she told me to pay to see a dermatologist but at my age what did I expect. I was 48 at the time and come from a family of women with thick curly hair. One of my relatives has thick curly grey hair, she is 78 and I must admit I have hair envy

[Hidden in reply to Lora7]

That's awful. I've seen both a Male and female and neither were sympathetic with me either. I'm 30 but hair dye was mentioned twice even though one of the GPs I'd been going to for 5 years and he knew fine well I'd only just started dying my hair, months after noticing my hair loss (I've read lightened hair helps to make receding hair less noticeable).

I too was advised to pay to someone privately and my GP even told me to ask a hairdresser about it! I'm sorry you are going through that

[Lora7]

I have dyed my hair for thirty years (I have blonde highlights) and it never affected my hair at all. I still dye my hair now, I tried stopping for 10 months and it made no difference at all and I hated my grey hair.

[Hidden in reply to Lora7]

I think they are just trying to convince me theres no medical reason for my now significant hair loss. I only dye the top half of my hair too as I like the under layer to be my natural colour, yet my hair fall is both the dyed and the natural hair. I have noticeable receding behind my ears which is my natural hair colour. I also have pubic hair thinning (very noticeable), but again, they just aren't interested.

[Lora7 in reply to Hidden]

You sound like you have thyroid disease to me because I have lost a lot of my body hair and also my eyebrows have thinned so much that I have had them micro bladed. They have tried to fob me off telling me its my age but one of my female relative who is in her 70's still has her body hair and She has to get her eyebrows waxed as well as her top lip lol

[Hidden in reply to Lora7]

The age card, so convenient for them to use. I am 30 so they cant use that yet for me, but I do have a history of mental health issues and that has been used against me many times, I've got very dark circles under my eyes too so lack of sleep has been mentioned a lot and when I say I sleep plenty, they say its quality of sleep. Thanks again for replying to me.

[SilverAvocado in reply to Hidden]

I think you're v right that they pick these things up as excuses. It's very frustrating because they're supposed to be experts, but any busy body you need could spout similar nonsense.

I've been ill 6 years and I've slowly come to realise that doctors can be quite manipulative. Their primary concern is often to get us out of their office with as little hassle for them, and they don't mind if they're very hurtful to do it.

It amazes me that doctors will find all these excuses not to take us seriously or to give a diagnosis

[Hidden in reply to SilverAvocado]

You are spot on with that comment. It scares me the way they can be, I feel like I'm living a boy who cried wolf scenario as I have been sent for lots of blood tests over the last couple of years and most were normal and the ones that arent are currently being ignored.

[Lora7 in reply to Hidden]

I haven't slept much last night because I am feeling anxious, today I am going to have my hair done. The thought of being surrounded by women with luscious thick hair and me sitting there under a bright light with my thin balding head fills me with dread. I think I rather go to the dentist lol

[Hidden in reply to Lora7]

I'm sorry you had such a difficult night. I'm sure the outcome will be worth it, I hope your hair looks lovely and you feel lots better.

I too look at people with thick hair and feel envious (my daughter seems to have my hair genes and she has got such thick, silky hair, it sometimes makes me think of my hair only a year ago and how thick it was).

Good luck with the hairdressers.

[Lora7 in reply to Hidden]

Thank you. I know I will feel better about my hair afterwards but my hair looks so much thinner when it is wet and you can see just how receding my hairline is.

[Hidden in reply to Lora7]

Is the receding permanent or could there be a way to improve it? The only thing that is keeping me going when I'm picking up 'tumbleweeds' of hair from my floor is the possibility that mine isn't permanent and could grow back.

[Lora7 in reply to Hidden]

When I was in remission for 4 years all my hair grew back and it had been falling out for a few years. I think when the body is under stress the first thing to go is your hair because it isn't really necessary. What are your nails like?

[Lora7 in reply to Lora7]

I also think that having a fringe hides your receding hairline. I'll check back later to tell you if my hair has been transformed! (miracles do happen)

[Hidden in reply to Lora7]

Thats a good idea.

[Hidden in reply to Lora7]

Well I sincerely hope theres a way your hair will grow back as I know how distressing it can be.

My nails are ok. They arent as mice as they used to be, but they arent bad either. They actually do seem to have improved with me taking iron. My hair hasn't though but the GP said to give it a couple of months as the endocrinologist who replied to her letter said that the most common cause of hair loss at my age is low iron.

[Lora7]

I don't suffer with mental issues but when my thyroid was very overactive my husband came with me to one of my appointments at the hospital and expressed how worried he was about my state of mind. At the time I became very paranoid about everything which can be a sign of the illness. After the appointment I told him he hadn't helped me by saying that to him and I was right because the Consultant wrote to my GP recommending I have counseling which of course I refused. All these years later he apologised for what he had said because he realised that it was overactive thyroid causing me to act that way.

[Hidden in reply to Lora7]

Wow I'm sorry you had to deal with all that. They are so quick to brush people off its actually shocking.

[Lora7 in reply to Hidden]

Unfortunately that is how some Doctors view women with thyroid problems. I once sat there with tears streaming down my face in front of a hospital Consultant because I felt so ill and he said I couldn't be feeling ill because I was taking PTU to stop me being overactive, my TSH was 9 at the time and he wanted me to continue taking the tablets. I told him I wasn't coming back so he discharged me from his clinic.