I have wrote to you knowledgeable people a few times this past year. I have no medical diagnosis but have been having hair shedding which is continuous and had been so for a long time, I feel weak a lot, tired a great deal and yet I sleep well. I have a family history if hypothyroidism although I myself dont have it (TSH 1.88). I recently visited a hairdresser and even she said my hair was falling out in her hand and that my scalp was bright red.
Ive seen 3 GPs and a rheumatologist, nobody feels as though my hair shedding is a medical issue (I have a receding hairline, wider than usual parting and very thin hair as opposed to my very thick hair 14 months ago). I'm writing this now having been awake around 6 hours and already feeling shattered, yet again.
My GP finally decided to refer me to an endocrinologist even though he feels my hair loss is idiopathic (he said its telogen effluvium, I've had it for ages now and extremely so since last September where hair is all over my floors, a lot gets in my brush). He said there is a chance they wont see me as blood tests indicate no issue.
I was also told I have low testosterone at a level of 0.4 by 2 GPs and a receptionist, now to be told I don't have low T and it's normal for me. My result actually states <0.4 so it could be zero for all I know.
I am now just wondering if anybody can tell me what will go down at my appointment. I'm almost 31 and I cant stand having no energy, I can't stand the weakness and tiredness. Naps do help me, but I cant go through the rest of my life having naps here and there. I have a 12 year old child and am having to look for a job very soon and the thought makes me want to cry. I genuinely feel wrecked a large portion of the time (although admittedly not all of the time). I also have very dark circles under my eyes, I've been told this is sleep quality. I disagree but nobody is listening. I'm terrified I'll either be refused my appointment or they'll just brush me off like everybody else seems to be doing.
I have a family history if hypothyroidism although I myself dont have it (TSH 1.88).
Testing TSH alone does not give us the full picture. A TSH of 1.88 discounts Primary Hypothyroidism (TSH would need to be over range for that, diagnosis tends to be when TSH reaches 10), but it doesn't discount Central Hypothyroidism which is diagnosed when TSH is normal, low or slightly elevated with a low FT4. So it's essential to test FT4 and preferably T3 as well. Also important to test are thyroid antibodies, which will tell us if we have autoimmune thyroid disease. Because antibodies fluctuate our test results will also fluctuate.
Hair loss can be a sign of hypothyroidism but it can also be caused by vitamin deficiencies:
Low ferritin can cause hair loss and other symptoms, check those within this article (linked to for symptoms only, ignore any reference to supplements)
Thanks for taking the time to reply to me. I cant afford the private tests at moment. I do have relatives I can borrow money from but am not in a position to pay anything back so I'm scared to ask. I'm feeling like hypothyroidism is less and less likely as although I'm very tired and also feel weak and shaky, a nap does wonders for this and I have head and pubic hair loss but my eye brows are the fullest they've ever been.
Ive had those tested previously (Vit D etc) and had vitamin D level of 16.3 although wasn't given a reference range and ferritin level of 20 (range 15-150). I have since taken 40,000 iu a week of vitamin D for 7 weeks and 210mg of iron, upto 3 times a day for around 8 weeks. The GPs wont retest and said if it helps, it helps, if it doesn't, it doesn't.
My dark circles are constantly being put down to sleep and I've been told I look tired. I do have a history of mental health issues which this is all conveniently being linked to.
Do you know if the endocrinologist would be willing to test me for thyroid antibodies? I have had anti nuclear antibodies although I dont believe they are linked. Thanks again
If you get a referral to an endo then they can do all the thyroid antibodies
TPO and Tg for Hashi's (underactive)
TSI and TRAb for Graves (overactive)
As for your Ferritin, after prescribed supplements then retesting should be done to see if you need to continue at a maintenance dose.
As for Vit D, that would be severe Vit D deficiency. I had that with a level of 15. Once the loading doses are finished, it's essential to retest and then continue at a dose to reach the level recommended by the Vit D Council/Vit D Society which is 100-150nmol/L and then adjust dose to a maintenance level, which will most likely be for life when there's been Vit D deficiency. I reached the recommended level with 2.5 months (I self supplemented) and even now, 4 years later, I still need 5,000iu D3 daily to maintain the recommended level. Most doctors wont retest Vit D, which is very negligent, so it's essential that we follow this up ourselves if the GP wont. I do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Your GP won't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
It's quite possible that some of your problems are due to low nutrient levels, even though you've supplemented for ferritin and Vit D, you don't know your current levels.
210mg of iron, upto 3 times a day for around 8 weeks.
As you had 3 x iron tablets daily, this is the treatment for iron deficiency anaemia. Was that confirmed by a full blood count/iron panel? If so then your GP should follow the NICE Clinical Knowledge Summary which suggests
What monitoring is recommended for someone being treated for iron deficiency anaemia?
•Recheck haemoglobin levels (full blood count) after 2–4 weeks of iron supplement treatment to assess the person's response. The haemoglobin concentration should rise by about 2 g/100 mL over 3–4 weeks.◦If there is a lack of response, see the section on Inadequate benefit from initial iron treatment.
◦If there is a response, check the full blood count at 2–4 months to ensure that the haemoglobin level has returned to normal.
•Once haemoglobin concentration and red cell indices are normal:◦Continue iron treatment for 3 months to aid replenishment of iron stores, and then stop.
◦Then monitor the person's full blood count every 3 months for 1 year.
◦Recheck after a further year, and again if symptoms of anaemia develop subsequently.
◦If haemoglobin or red cell indices drop below normal, prescribe iron supplements. ◾Further investigation is only necessary if haemoglobin or red cell indices cannot be maintained this way.
•Consider an ongoing prophylactic dose in people who are at particular risk of iron deficiency anaemia.
So it doesn't appear that your GP is doing the monitoring that is necessary.
Thank you for another informed response. I was told that my vitamin D was insufficient and not a deficiency. I've also been told I'm not anaemic so not sure why I was prescribed the full amount. One GP originally prescribed me just 800iu a day vitamin D for that level. This was way back in December and I got the correct dosage June.
I suppose it could be the ferritin, perhaps my dark circles could be too? I have light periods though and eat a high meat, beans and moderate veg diet. I cant see why my ferritin should be so low, but I guess we are all different with individual requirements.
I do have an endocrinologist appointment for early October, but that's if they'll even see me (my GP said they might refuse). I hope they do as I cant keep fighting through the days, the tiredness is relieved by a nap but if I'm not able to get a nap I'm shattered and my legs feel weak and I find it hard to even talk when I'm that tired.
vitamin D level of 16.3 although wasn't given a reference range
In England and Wales the unit of measurement is usually nmol/L. I think it's either Scotland or Ireland that we sometimes see ng/ml.
So if it was 16.3nmol/L you will be deficient not insufficient as per NICE treatment summary for Vit D deficiency: cks.nice.org.uk/vitamin-d-d...
(click on Management > Scenario:Management)
"Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.
Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
and here's your proof that you were in the Deficiency category:
I have since taken 40,000 iu a week of vitamin D for 7 weeks
Those are the loading doses and wouldn't have been prescribed if you weren't deficient. So it's now essential that you retest Vit D and dose according to your new level.
It doesn't appear that you are getting the right support from the GPs that you have seen, which actually doesn't surprise me because the NHS seems to be crumbling more and more each day. Is there another GP that you can see, or possibly change surgeries?
I've seen 3 different GPs at that surgery, out of 4. 2 are known for being rude and/or useless. 2 of the ones I've seen are lovely but I feel I'm not being taken seriously. I was even offered antidepressants at my latest appointment to help with my tiredness (I took antidepressants for almost 6 years until 2014 and they made me exhausted, I have no clue how they'd help tiredness).
I was also offered steroids for my red scalp but I dont want to just take things without knowing the cause. For example is my redness inflammation or could it be irritation? Could it be linked to my hair loss or could it be my shampoo? Those are the types of things I'd like answers to.
A couple of people close to me have suggested I change surgeries and I am seriously thinking about it. I am just worried I'll be met with the same kind of standards.
It's a nightmare I am having financial difficulties at the moment too and feel like I'm stuck with what I can do in regards to going private etc. I know that I wont be able to handle a proper job when I feel like this. I've been doing a college course since September, 1 day a week and a few times I've had to make up excuses to leave early as I was so tired I couldn't even listen to the lecturer. I just want to feel normal, I dont feel healthy at all. I was even told my dark circles looked like a black eye the other night that's how bad they sometimes are. But then I do get the odd day where I feel fine, which confuses me as if it was an illness surely I'd feel this rundown each and every day.
Have you applied for copies of your Hospital records yet?
Do you know all your blood test results? Kidney Function etc?
You have symptoms, so the doctors should keep investigating.
You also have the positive ANA result which isn't conclusive by itself so they should keep looking. It may indicate that you may have an Autoimmune Disease but doesn't confirm that you have. More tests needed.
Hopefully the Endocrinologist will check Adrenal Function and also do full Thyroid tests including FT3 and Antibodies as already mentioned.
Has anyone investigated Lupus ? Just a thought, I don't know enough about it to comment but apparently, these are classic symptoms of Lupus too.
Thank you for taking the time to reply. Lupus was ruled out, I was told with lupus I would have multiple abnormal blood tests. I haven't asked for copies but my GP has given me copies of certain ones such as my testosterone levels, lh, fsh and prolactin as I'd mentioned my low t in my previous appointment.
I have results for things such as albumin, phosphate, calcium and the likes. All within range.
I have had lots of blood tests, I just feel like there has to be a reason I'm losing so much hair at my age, not to mention the tiredness and weakness. If its iron (my gp did say the most common cause of hair loss in someone my age is low iron), when will it improve? I took a months for of supplements late last year and have been taking supplements daily since Christmas Eve. 14mg a day until my GP gave me the 210mg ones to take.
I also have a very low libido which is unusual for me and that is also being blamed on psychological issues. I'm the happiest I've ever been, but yet the mental health excuse persists. I wonder if I'll ever be free of it being used against me.
Make sure to take your list of symptoms and a list of questions.
If not mentioned by the Endocrinologist ask about an Ultrasound scan of your Thyroid and Parathyroids.
For my first appoinment I received a phone call from his secretary to say she was posting me a blood form and to have the tests one week before my appointment. That was eight years ago though.
ps
How was Lupus ruled out - as there is no diagnostic test to prove it?
I'm not sure in regards to lupus, I just know both my GP and the rheumatologist said its not lupus. Although I think the rheumatologist said no evidence of autoimmune disease as opposed to directly denying any exist.
Thanks I will take a list of symptoms and questions. Is it ok to ask th for a scan, I get very nervous asking for tests etc, asking to see an endo took me 20 minutes ha. My mother has hyperparathyroidism, my dad has hypothyroidism, perhaps mentioning this might encourage them to help me figure out what or if something is going on.
I don't really have any experience of Lupus - and every time I Google something different comes up so not very helpful . . . .
Yes, I would definitely mention both parents conditions, family history is relevant - so add to list !
When I eventually got back to see my Endocrinologist last year he was interested in my telling him that I'd only recently been found to have Vitamin D insufficiency. He ordered the Ultrasound scan of my Thyroid and Parathyroids then.
If I remember correctly, I read somewhere that a newly treated Vitamin D deficiency may reveal previously hidden Hyperparathyroidism (or was it Hypo).
You can ask for anything - they can and may say no!
Following advice given via a helpline I asked my GP for an Ultrasound scan of my Thyroid in 2010 (he did ask why). This is what led to my being diagnosed and treated (long story).
Are you taking your temperature first thing every morning? This is important. Make a note of any low readings (under 36 or under 36.5).
Add a diary of low readings to your list of symptoms. Mine was often 35. This is symptom of Hypothyroidism.
I've never bothered to take my temperature as I have a tendency to overheat during the night and if I am active in any way. However I also feel the cold more than others so perhaps I should start logging temperatures.
My mother has vitamin d deficiency or at least low vitamin d, so it may well be that that you've read about. She also has hypercalcaemia, however my calcium is right in the middle of the range so hopefully I dont have anything similar. None of my parents have had noticeable hair loss though and none of them have my hideous dark circles, nobody in my family does. I'm starting to think I should do an elimination diet as I have noticed I get sore the day after eating lots of junk food (sore skin as in backs of arms, sometimes my neck is sore to touch and also the sides of my upper back, I've read this can be inflammation which can be caused from certain foods). This only occurs if I eat an excessive amount though so not often.
I will ask them for a scan then, as you say they can say no, but no harm in asking.
No rashes as far as I am aware. My night time overheating has improved this past few months, I wonder if it could have had anything to do with low vitamin d?
Will kidney tests be things such as Urea, egfr etc? If so, I have time here and all are within range. I've had liver panel, bone panel etc. Most of my test results are in middle of range and seem good.
B12 was 376 with a range of 191-663.
I also have adult acne and a slightly hairy face, obviously this can happen as we age. I've had PCOS ruled out as my testosterone would apparently be high with that.
Hopefully my endo referral won't get refused and I'll have answers.
Facial hair (on chin) is a symptom of Hypothyroidism.
I've just edited my last reply.
I'd include facial hair and all symptoms on your list to show Endocrinologist.
Look through all your test results again and see if T4 or FT4 was ever tested when TSH was. Look at the range. If it was tested and is near the low end of the range then this could be an indication of Central Hypothyroidism. Because, if your T4 was at low end of range your TSH would be higher than 1.83. Did you have your blood tests early morning?
Where the results actually are in the range can be significant, sadly if in range they are usually reported as 'normal'.
Also - with Hashimoto's the regular Thyroid Function blood tests results can fluctuate and fall within the normal ranges. So it is vital to have Antibodies tested in an attempt to confirm or eliminate Autoimmune Thyroiditis. An Ultrasound scan would also revealed Thyroiditis.
Thanks again for replying to me. My results that I have at hand were from a blood test taken at 11.10am. I wont have eaten as I never have breakfast.
Very interesting about the chin hair, I will definitely mention that. The only tests I had in regards to thyroid was the TSH. I specifically mentioned Hashimoto's given mu family history of hypos but was told my TSH wouldn't be normal.
I am specifically going to mention the antibodies when I go.
Both GPs who I've spoken to have acted like these are no big deal. Theres no real reason I should have low ferritin especially as I am a virtual carnivore and love beans and although i dont eat them daily, I eat vegetables, I always have even as a young child.
I've also noticed that my periods have become very light, lighter than they've ever been and I no longer get ovulation symptoms like I used to. I'm not sure if this is relevant to anything but I have read low testosterone can cause that, however my GP is basically saying theres no such thing as low testosterone in a woman, the same GP who told me I had low testosterone in September of last year.
Once I have a job I will get private blood tests, a couple of people I'm close to have told me I should go private, I just can't afford to at the moment.
I did get B12 and folate tested, this was all back in June 2018. B12 was 376 (range 191-663) and folate was 5.1 (range 3.89-26.8). Interesting my GP told me in September I was slightly anaemic but I have since been told I am not and was not.
I guess all I can do is hope for the best at my endo appointment. I just really hope they see me, my GP was very reluctant to refer me and only did as I was adamant. He is the nicest GP I've ever been to but even he seems to be trying to blame it on my precious mental health issues.
I’ve just read through your post and all the comments, logging in my head every new symptom that you’ve noted. Even after the first post, my head was screaming at me that you have all the classic signs of a Vit B12 deficiency, and now that I have got to the end of your post I’m even more convinced. Your B12 level, even though it’s ‘within range’ is still low, it’s anything <300 they now will consider as insufficient and yours at 376 (and mine at 349) are only just over that. You can be symptomatic even with the levels that we have, because you may also have an issue with your body utilising and absorbing the B12 it is getting from your food. The fact that you have such a low level considering the diet you have tells me that this may be the case for you. I’m not medically qualified in any way, but I do have the personal experience.
Some mental health issues can also be a result of a B12 deficiency. I was reading something about this only yesterday- I will find the link shortly and post it for you.
The thing is, as with hypothyroidism, Hashimotos etc, GP’s, endos, and the medical profession in general, they don’t really know much about B12 or other Vitamin and Mineral deficiencies because like someone else said, they aren’t taught about it, which is silly because they go hand in hand and our bodies are made up of all these vitamin and minerals, much like everything else in nature, not chemicals and synthetic crap!
Your GPs are being negligent in refusing to retest you after putting you on supplements, too much iron is very bad for you, and should be retested as SlowDragon and others have said. (They know much more than me, I can only go by experience of B12 deficiency)
I’ve had to source my own B12 injections because even though my GP has now said after (confirming it with a haematologist) that I do need supplementation. I was only offered tablets, I refused them because of 1- the type of B12 they were offering as a tablet isn’t really effective and 2- of your deficient in B12, and we all know b12 can only be gotten from food sources, then a tablet isn’t likely to work because we wouldn’t be deficient of our body could absorb it in that way in the first damn place!! There is another forum on here called the Pernicious Anaemia Society, they know all there is to know about it on there, also check out a site
It’s really good and has a lot of really good links too. There’s also a link to lady on there called Pat Kornic who tells you all about ‘optimal levels’ and why they’re much more important than just having ‘in range’ levels!
It is also where I read about the mental health link to b12 I was talking about too.
I hope some of this helps, when it comes to your endo appointment or any appointment come to that, I find it better going in with a written list of everything I want to cover a great help as like you, I find it hard to ask for tests etc but it’s your right to get the healthcare you deserve and we pay for in this country. It’s never free, we pay NI for a reason and the NHS is one of them!
They have a symptom checker on that website too- print it out, give it to someone that knows you well, be that family or friend, partner or parent and ask them to tick all that they think apply to you, preferably without your input or help. I gave it to my hubby (sent him the link in work, he printed it and filled it out without my being there) there less than ten that he didn’t tick!! He said it frightened and sickened him that professionals that we put our trust in, could let us down so badly and let someone suffer for so long, because they would rather treat a number (reference ranges) and not clinical symptoms that their patients were telling them about!! It’s completely changed his view of the medical profession now.
If you need any help or advice, we are all here for you. If you’d like to vent, I’m often up at silly o’clock, drop me a pm. I don’t mind
Thank you for this response. I will look into this or maybe even take a B12 supplement. I do get lots of tiny, pus filled spots when I take certain supplements, so I have to be careful but can't see B12 being a problem.
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