Some advice please: I did post a few months ago... - Thyroid UK

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Some advice please

Tuesday88
Tuesday88

I did post a few months ago so apologies for the repeat. I just want a little advice.

I have had an intermittent puffy face for at least a year now, this is the month I realised it was puffing up last year. Since April it never goes fully down and is getting worse. It's most prominent around my lips and the front of my cheeks (also my forehead just above my eyebrows looks a bit puffy). My lips actually feel like they are sticking out. My jawline is rounder and my cheek bone line that I loved has now pretty much gone. I have terrible dark circles.

I've also had thinning hair for just over a year (that I know of) and it is not stopping! I was initially told Telogen Effluvium but it's getting worse, my hairline is receding all over, including the nape of my neck. It feels shockingly thin in comparison to earlier this year.

I have pretty much zero libido and I also keep overheating. I guess that could just be hormones (I've just turned 30), but I can't even walk 5 minutes on a very cold day without burning up and I still can't sleep with my 7.5 tog duvet as I wake up boiling. Conversely, if I'm not moving and it's cold I always seem to be affected by the cold more than others.

I first thought it could be my thyroid as I typed "Puffy face, thinning hair, loss of libido" into Google and many links to thyroid sites etc came up and I also have relatives with hypothyroidism. I had my TSH checked and it was 1.88 so definitely within range.

Is there anything else these things could point to? I am sick to death of seeing my brush covered in hair when I used to only get 2 or 3 hairs each time I brushed it. My face always feels bloated. My lip area feels really uncomfortable, especially when my mouth is actually closed.

I can't yet afford to pay for private tests, but when I get a job I will definitely get some as I know something isn't right. I have low normal ferritin (20u/g) and my GP did say it's pretty common in menstruating women. I have quite light periods though so not sure why mine would be that low. I've been taking Iron plus Vitamin C for around 5 weeks now though to see if that will help me.

Sorry for the extremely long post but I'm going out of my mind.

48 Replies

Have you had blood tests to check iron before supplementing.

Have you had any Antibodies blood tests?

Only anti nuclear antibodies which came back positive.

So what was the diagnosis?

Are you on any medication?

Or

Have you been told that you have an Autoimmune Disease?

Any further testing being done.

Have you been referred to a Rheumatologist or an Endocrinologist or any Medical Consultant?

Had any scans?

Yes I've been referred to a rheumatologist but my GP doesnt actually think anything is wrong with me and said it's only because I'm adamant there is. No medication or anything. No diagnosis as of yet as I still don't have a date for my rheumatologist appointment as my original one was cancelled.

Positive anti nuclear Antibodies can indicate an Autoimmune Disease. Try a Google search.

Can also be caused by certain medications but you are not on any ?

I would contact the hospital First Appointments department and ask when you will be seen. Tell them you have symptoms that are causing concern.

Or

see GP (preferably when symptoms present & obvious) and ask him/her to chase up referal.

I've Googled it loads but can't seem to find any autoimmune stuff that could cause these things. My specific antibody result is apparently present in 3% of the healthy population too. My GP doesn't seem to believe my hair is thinning. He did say my scalp was a bit red but that's it. It is without a doubt thinning though and quite significantly.

I've rang them and they said the rheumatologist is fully booked for the next 8 weeks and has no further appointment dates.

MaisieGray
MaisieGray in reply to Tuesday88

The ANA test may be positive with several autoimmune disorders. For instance, people with the autoimmune disorder systemic lupus erythematosus (SLE) are almost always positive for ANA, but the percentage of people with other autoimmune disorders who have positive ANA results varies. Also, a significant number of patients with a variety of other types of disorders, and as with thyroid antibodies, even some healthy people may be positive for ANA, especially at low levels. So it's good you are seeing a rheumatologist as a start point. The problem is that all your symptoms could be indicative of say, hypothyroidism, but equally, of other disorders, and without a full thyroid panel rather than just a TSH test, it's difficult to get the full thyroid picture. I fully empathise with the problem of having to fund private blood tests - on Monday I told my Dr that my hair wasn't long because I like it that way, but because I can't fund my own T3 and private blood tests, as well as hair cuts, so the hair cuts have had to go .... I doubt it hit home though. Regarding your swollen face, if you google something such as hypothyroid moon face, you should find some photos to compare with.

Tuesday88
Tuesday88 in reply to MaisieGray

I can imagine how awful that must be. It's not nice when money is tight but even worse when it's tight due paying for things you shouldn't have to fork out for.

I do appear to have a slim face, but it can vary from day to day. I Have a photograph on my phone from October one morning and my face looks absolutely massive. I'm 8 stone 10 and slim. I can't stop taking pictures of myself because it's so alien to me. Although with it being intermittent, I do now wonder if it could be a food allergy. Wonder if those can cause thinning hair and tiredness too as I quite often need a nap between 1 and 2pm.

Tuesday88
Tuesday88 in reply to Tuesday88

This is meant to say similar. My face hasn't been slim since April.

Yes my GP told me I was slightly anaemic, albeit within range.

So the iron is prescribed and being monitored by GP ?

No. I came on here in September and somebody told me to try iron with vitamin c as apparently it helps with absorption. I originally took a multivitamin but they cause me to break out (I do have adult acne but that was the third time a multivitamin has caused me to break out)

Never take multivitamins or multiminerals.

Ah I see. Can they be dangerous? I've noticed I have very greasy hair these last 4 weeks and I wonder if it's the supplements. I was told on here my ferritin should be in the optimal range, but I'm not sure how to help that naturally. I eat pulses, meat, greens and have quite light periods so not much i can really do about that then I guess.

I just don't think we should take supplements unless we are deficient.

Also if your GP said you are slightly anaemic - I think he should prescribe and monitor you with follow up blood tests.

Ask GP to retest Ferritin after you've been taking it on for 3 - 6 months?

I'll ask when I go in a couple of weeks. Do you think I should stop the supplements for now? I think as long as your within range GPs don't seem to have anything to say.

Sorry, I can't advise on what to take or stop taking. But worth getting iron status checked ? Ask GP?

I only take Vitamin D because was found to have 'insufficiency ' when tested.

Folate was defficient, but when retested after supplements was very high. So dropped frequency of supplement. Both supplements prescribed by GP who did tests.

My Ferritin was same as yours then a little lower. But, as you say, GP not interested when in range. Even if very low in range. I'm not pushing it because I can't take iron tablets anyway.

Ok thank you very much for all your advice. I will stop taking them and mention it all again when I'm next there. I hate taking any kind of pill any way, I rarely take painkillers or anything (luckily I seldom need them anyway).

I can't take iron tablets because I have a rare bowel condition; several other bowel conditions and pelvic floor failure so do not have normal bowel function. Therefore I cannot take anything (such as codeine or iron pills) that causes constipation. I also have to keep an eye out for bleeding and iron pills can cause black stools. I'm not saying you shouldn't take iron pills - just ask doctor for followup tests in future.

why don't you take multi vitamins/minerals?

Serum Folate 5.1

Have you had any other nutrients levels tested especially B12 and Vitamin D?

Also - I'm sure you've already considered this but 'intermittent ' - could the puffiness be an allergic reaction to a food? Or any medication you may have used intermittently?

I was wondering if you have had any Antibodies tested at all.

You could ask about Thyroid Antibodies - TPO (Thyroid Peroxidase ) and Tg (Thyroglobulin ).

I assume you've had FBC, kidney & liver blood tests then ?

Yes I had a lot of tests such as liver function etc and B12 (I think that was 371). No vitamin D was tested though. My GP told me last year that everybody in the North East of England will be deficient in Vitamin D anyway.

The first time my puffiness happened (or at least the first I noticed) I had been to an all you can eat buffet the day before and I originally thought it was just salt. But I've tried decreasing salt, increasing fibre, increasing fluids, decreasing carbs. I can't pinpoint anything specific and it's slowly getting worse. Some days are worse than others but it never goes fully down anymore. I generally eat healthy anyway and as of July 2017 I am the lightest I've been in 10 years and the healthiest I've ever been. Don't smoke and never have, haven't drank alcohol in almost 6 years. It's very frustrating.

Tuesday88
Tuesday88 in reply to Tuesday88

No thyroid antibodies or any specific antibodies tested

Ask for them.

If you have to wait for Rheumatologist appointment then ask GP to do these and the nutrients levels.

Are you in the UK? Do you think GPs will test them? I'm thinking of going back again soon anyway so it would be worth asking.

I am. Are you. Varies from GP to GP. You just have to keep asking.

Mmm . . . lightest ?? And healthiest you've been . . ?? Doesn't sound like Hypothyroidism . . .

Prior to symptoms did you eat shellfish ? Or pilchards ?

No, no shellfish and definitely not pilchards. I have a photograph on my phone of one of my worst days and I wonder if i could try to pinpoint what i ate the night before. My 3 relatives with hypothyroidism are all skinny. One is my father and he eats a shocking amount of food and has stick legs. His GP did mention it's unusual not to gain weight but all 3 of them are the same so perhaps it's something to do with their genetics?

Definitely ask for the

TPO

Tg

and

FT3 tests then.

Do you know if your 3 relatives have Autoimmune Thyroiditis? (Known as Hashimoto's )

Ok I will ask for them. If they refuse I'll save up and pay for them privately.

I'm not sure about his relatives, but my Father hasn't got a clue what was tested he was just diagnosed and placed on thyroxine. He has felt great ever since the correct dosage was achieved.

Make sure to ask for print outs of all your results. Even if told ' they're ok' or 'they are all in range'.

Copies of medical records can be obtained free of charge now (since new regulations 25 May 2018).

Thank you I will do that from now on. I do have printouts of my most recent ones but I only asked so I could google the one abnormal one. Strangely that printout didnt include my hormones that are also apparently normal yet he did say I have low testosterone, but I presume it's within range still as nothing else was mentioned of it.

LOW testosterone ???

Why on earth presume it's within range ???

GP said low. That means LOW, below range.

Ask for a referal to an Endocrinologist.

Ask for tests/investigations to check out your Adrenal Gland function.

It really would have been helpful to put all results in initial post.

What is B12 range and Folate Range?

Always give normal ranges in brackets when giving results.

Helpful if all results given together in post with full details : dates of tests and ranges, any added comment by lab or doctor.

I'm not sure the range as I'm in bed and my results are downstairs but I'm within range on both of them, quite above the low end of B12 I believe.

The only added comment was my positive ANA saying not diagnostic

'Not diagnostic' -

I'm no expert and not medically qualified but assume that this is the reason you've been referred to a Rheumatologist. Your symptoms and this result.

I wonder if your GP would be happy to test some Antibodies (given that your Rheumatologist appoinment has been delayed) ? Also as you are suffering with bazaar symptoms and so young.

Perhaps he would. He is aware of how distressing I find it. The issue is getting him to believe I have thinning hair and puffy face as he said he can't see it. I do have plenty of photos I could show. My upper eyelids also puff when my face is at its worst. I also have kept a small amount of my hair in a sandwhich bag to prove it's coming out at its root and not breakage. I feel like a psycho keeping my hair and taking probably 100's of photos of my face at various phases of puffiness!

No, not a psycho, good idea. Show the worst of the photos - the most swollen to your GP. Usually - symptoms abate when we have appointment !!! And show the hair.

I kept mind then forgot to produce it to Endocrinologist. Then, just before my last appointment, my eyelashes were dropping out but I forgot to mention !!

Also

Check your temperature first thing every morning and make a note if below 36. Low body temp is a symptom of Hypothyroidism.

Ok thanks for the tip I'll get a thermometer and try it. I am starting to wonder if this could be food related though as you suggested. My father didn't have a puffy face or thinning hair as his symptoms so maybe I'm barking up the wrong tree so to speak.

It's a good idea to show the worst picture to my GP, as one of them is truly shocking and you'd never guess my face belongs to somebody who weighs 55kg. I also have a photo from last December with a clearly slim face to compare it to. Whether they'll take me seriously is another matter though, but worth a try. Thanks again for all the advice.

GP has to take you seriously - the camera can't lie! You could just stick to showing those 2 photos. Then if GP asks to see more . . . .

cazlooks
cazlooks in reply to Tuesday88

change your gp?

Tuesday88
Tuesday88 in reply to cazlooks

This GP is the best at my practice. I've been going to them for 6 years and they are lovely, patient and always listen to you. This is the first time I feel like I'm not being taken seriously and I don't know why. I do have extremely low self esteem and I feel he's trying to imply my hair thinning and puffy face is imagined (he hasn't said that but that's what it feels like). I could certainly try a different GP and see what they say though.

I cannot find a previous post. Did you delete it ?

Have you been tested for Cushing's Disease? That will cause a puffy face and hair loss like severe hypothyroidism will.

Tuesday88
Tuesday88 in reply to Kalicocat

No. My face does vary day to day though, just never goes down fully anymore.

next time you go to the doctors take an advocate with you, a family member or similar

Tuesday88
Tuesday88 in reply to cazlooks

Good idea. I'll see if somebody can come with me. Thanks

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