Advice needed before endo appointment! - Thyroid UK

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Advice needed before endo appointment!

Sheepcoat profile image
25 Replies

Hi all, I hope someone is able to help me and perhaps give me some advice before my appointment to see an endocrinologist on 29th November '14. Sorry in advance for this being a very long post...

I will give a background first of the whole saga; I have been having all kinds of symptoms since 2007, but my symptoms seemed to start getting really bad in 2009. The main ones which really bother me are total lack of libido/unable to produce much cervical fluid, and the fatigue I get the day after exercise. I also have urinary frequency which causes me to have constant UTIs and then thrush over and over again. I have seen numerous GPs and consultants, but no one seemed to know what was wrong. I saw 3 gynaecologists (all discharged me), 3 endocrinologists, a urologist, a family planning doctor, and also paid privately to have a brain scan done as my prolactin level was slightly high, but this was clear. The endos tested my thyroid function and everything kept coming back as normal. My urologist said he doesn't know what has caused/is causing my urinary symptoms. The family planning doctor said there is nothing wrong with my hormone levels (even though I calculated they were low at time of my cycle). I have just been going round in circles since 2009. I am now 34 and am very worried that I might never be able to have children as I feel as though I'm infertile at the moment with 2 day periods and hardly any cervical mucus/lack of libido. I haven't been able to have a relationship since 2010 due to this problem, it is so severe. Prior to these symptoms, I was functioning completely normally. Anyway, I ended up paying privately to have a thyroid profile carried out and the results are as follows:

Total thyroxine (T4): 110nmol/L (59- 154)

TSH: 1.59mIU/L (0.27- 4.2)

Free thyroxine: 19.3pmol/L (12.0- 22.0)

Free T3: 4.7pmol/L (3.1- 6.8)

Thyroid peroxidase antibodies: 77.2IU/mL (0-34)

Due to my antibodies coming up slightly high I was sent for an ultrasound of my thyroid and it turned out I've got a nodular goitre and a cyst. I went back to my GP and she said that because my thyroid levels are all within the normal range I can't be treated!! I just couldn't believe that after finally getting somewhere after seeing doctor after doctor my GP said there's nothing that can be done. I managed to get a referral to an endocrinologist at the Queen Elizabeth Hospital in Birmingham (Dr Boelaert?) and my appointment is on the 29th November. I just can't understand why my blood results are constantly coming up normal, but my symptoms are seriously affecting my life. My blood results always seem to make me look like a picture of health and I really can't understand it. The other symptoms I have are: twitching in my neck, anxiety, cramps, extreme fatigue after exercise, thirst, dry eyes, palpitations, alcohol intolerance (suffering for days after). Does anyone suffer with the same symptoms and normal blood results, and what was your outcome? I would like to know if there is any advice anyone can give me before I see the endo, as I am really worried I am just gonna be told 'sorry, your results are normal and there's nothing we can do'. Is there anything else I can ask the endo to test me for or are there any other more specific tests that can be done? Could it be that my thyroid hormones are 'imbalanced' in some way? I know that my mother has got a goitre and she suffered for about 15 years with symptoms and her results were constantly 'borderline' until a doctor finally treated her. I will be most grateful for any advice anyone can give me before I go and see my fourth endo...Thanks in advance.

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Fruitandnutcase profile image
Fruitandnutcase

I would take a notebook where you have made a list of bullet points for everything you want to mention / discuss and work your way through them.

Also have a page with your test results - mark out headings then each time you have blood tests write them under the headings, with the test ranges.

Make sure you tell your endo that your mother had a goitre too. I'm sure there is a link between thyroid and fertility - I don't know what it is but I'm sure someone on here will be able to tell you what it is.

Depending on how strong you feel it be worth taking someone along to your appointment with you for support.

Sheepcoat profile image
Sheepcoat in reply to Fruitandnutcase

Hi Fruitandnutcase, thank you very much for your reply and tips. I will definitely take a notebook with me and bullet points of everything I need to mention. I will also take someone with me as I think you're right in that it's good to have someone there as back-up incase I forget anything etc. I feel as though I'm going to a job interview I'm so nervous about it, as I'm so used to being told I am going to be discharged or that they have no idea what's wrong :-(

Fruitandnutcase profile image
Fruitandnutcase in reply to Sheepcoat

Good luck with the endo. I always went in full of hope and found I felt very 'flat' afterwards. Don't know quite what I was expecting but whatever it was I never found it. So if you go in not expecting much hopefully you will be surprised.

Sheepcoat profile image
Sheepcoat in reply to Fruitandnutcase

Yes that is exactly how I've felt after all of my appointments- flat and very disappointed. I think that I've always assumed that most illnesses are very easily treated after seeing the GP once or twice, but then after seeing several different GPs and specialists who kept saying they don't know what is wrong or trying to treat each symptom individually through various specialists, you kind of start to lose hope. I will take your advice and not expect too much. I have kind of accepted that I will have to keep fighting and try to treat myself.

butcher3 profile image
butcher3

I think Fruitandnutcase makes a good point to take all that with you , i would also suggest you send your endo a letter before your appointment & take a copy with you outlining everything. I say this as i went for my endo appointment last week , he had a letter from my Dr & he wasn't interested in what i had to say or the list i took with me. Definitely take someone with you if you can.

Sheepcoat profile image
Sheepcoat in reply to butcher3

Hi butcher3, I think that is a great idea to send the endo a letter prior to appointment as it is sometimes hard to cover everything in an appointment slot and sometimes I can tell the specialist isn't listening properly to what I am saying or just becomes agitated. I need her to know how much I really need someone to take notice and think this is best done as a letter, as you say, so thanks for that. And sometimes GPs don't exactly put across a very good picture when making a referral.

Alexara10 profile image
Alexara10

Hi, am suffering virtually all the same problems and being told that the levels are "within the range" and that's after having thyroid removed. Have just seen a GP who has listened to everything I told him and arranged for me to have a fasting blood test covering ferritin, vit D, B12 and follate as well as the illusive T3 which is not done automatically. When I had my thyroid removed (in France) the surgeon told me that thyroid problems could be heriditary and suggested my daughter had checks too. She has problem getting any thyroid tests done!!

But I also have "white coat" syndrome so always take hubbie with me so that the right questions do get asked and answered. If the GP isn't interested I always feel that I am a nuisance and shouldn't be there. So I think that you should definitely take someone with you who knows you and your symptoms and will be supportive of you and happy to go in to see doctor with you. Don't be afraid to make notes before you go but don't be afraid to write down any answers. We have also just bought a book from Amazon which we are finding very interesting and helpful its called "The Great Thyroid Scandal and How to Survive it". Good luck with your appointment.

Sheepcoat profile image
Sheepcoat in reply to Alexara10

Hi Alexara, thanks for your reply. Sorry to hear you are suffering the same as me...isn't it just a nightmare? I can't believe it is so hard to get the right treatment and that the ranges and thyroid blood results don't really seem to mean anything! It seems that 'normal' levels vary from person to person. I've got a friend who only had one symptom (a rapid heart rate) and her tsh was well out of range and now she's getting treated, but she really had no other symptoms apart from that! Yet I'm getting all sorts of horrible symptoms seriously affecting my life, but I'm a picture of health according to my blood tests!! It's so frustrating. I have also had the same experiences as you with GPs not being interested, talking to me like I'm imagining it all and just suffering from anxiety. It makes you wanna scream and shout. I started to feel like I was harassing my GP and she was sick of me. I will definitely buy that book you mentioned, and I will also be sure to ask for the B12 and D test. :-)

greygoose profile image
greygoose

Well, one thing stands out and that is that you aren't converting terribly well. T4 mid-range is 17.00, so you're a bit above it, but your T4 could still stand being a bit higher. T3 mid-range is 4.95, yours is 4.7, so it isn't even mid-range - should be top of the range for most people. TSH could be a tad lower. A truly 'normal' TSH is between 0.8 and 1.25. And you have antibodies, which are going to make things swing around a bit.

A blood test is like a photograph - that's the way things were at the time it was taken. That doesn't mean that it's always like that. At what time was that blood taken? Because TSH is highest early in the morning, so one should try to always have blood taken as early as possible - and certainly always at the same time so that comparisions are possible. You can't compare a TSH taken at 7.0 am with one taken at 4.30 pm.

The problem is, the majority of doctors believe that anything 'in range' (as yours are) is 'perfect'. They have no idea how bogus the ranges are and that it's where in the range that the results fall, not just being 'in range'. And that's why they don't treat by symptoms - and, of course, they have no idea what the symptoms are! It's a basic design fault in modern médicine, I'm afraid. Let's just hope that this new endo is capable of thinking out of the box!

So, you've had the anti TPO test and it's positive, if I were you, I would now ask for the anti Tg test. Point out that you've got anti-bodies because that puts a whole different slant on things. And, yes, thyroid problems greatly affect fertility. and libido, and cervical fluid - all things female, in fact! And the fact that gynies don't know that is criminal! Mine gave me a hysterectomy when she should just have tested my thyroid! And, yes, anti-bodies can be hereditary. Mine were.

Having said all that, I agree with those that say you should get your vit B12, vit D, iron, etc tested. In fact, any vitamin and mineral you possibly can get tested! These things can have a devastating effect on us if they are low - and yours probably are - they can affect conversion and all sorts of things - especially vit B12 and vit D. So, those are the tests to ask for, along with anti Tg.

Hope the new endo is understanding and helpful.

Hugs, Grey

Sheepcoat profile image
Sheepcoat in reply to greygoose

Hi greygoose, thanks ever so much for your reply- I found it very helpful. It sounds as though my levels are just all out of sync from what you say, but is there a way they can just be corrected without having to take meds for over or underactive thyroid? I do think my levels are up and down, and believe that in 2007 I had symptoms which were more underactive! How can consultants treat someone whose levels bounce around?

From looking at my previous tsh levels, it appeared it was declining slowly, but then suddenly went up, but this might have been because I had the blood tests a bit later in the day than I usually have them. All of my previous ones were in the morning, probably roughly at the same time.

That is so true about these ranges being a design fault in modern medicine. And you're right, doctors have no idea what the symptoms are! The amount of times I've had to describe my symptoms and get told that it isn't a 'common symptom' of a thyroid problem. I just can't understand why knowledge seems to be lacking in this area with most doctors.

Yes it is criminal that gynos don't know about thyroid problems causing all kinds of female issues- it's as though most doctors are just in denial about the symptoms it can cause and as though they don't believe a thyroid problem could cause symptoms which affect people so badly, and are always trying to think of other things it could be other than thyroid! It's extremely irritating. The last gyno I saw just said that my symptoms sounded very hormonal, but that was all. I guess it isn't for them to investigate hormones so much, but surely they should know the link and be able to do the basic tests. I can't believe you had a hysterectomy due to a thyroid problem, that is terrible.

I will definitely ask for the anti Tg test and the vitamins- it would be great if all I needed to do was take some vitamins and get back to normal, I would be over the moon! Thanks again for all your help. This site is fantastic and so glad I found it.

greygoose profile image
greygoose in reply to Sheepcoat

I disagree with you, there. Being a gyno is all about hormones. After all, everything that happens 'down there' is regulated by hormones. They should know them all Inside and out. There's no excuse. Nobody ever had a drug defiency but lots of people have hormone deficiencies.

The most important thing for you to do is to get to know your disease! And know that what you take for underactive thyroid is not 'meds' in the strictest sense of the word, they are hormones. Replacing the hormones necessary for life that your body can no-longer fully supply.

You have Hashi's. That is an autoimmune disease where the body attacks itself for whatever reason. Nobody really knows the reason, so there's little chance of being able to 'correct' that. OK, I know, lots of people believe that it starts with leaky gut and we should correct that, but I don't buy into that one 100%. Seems to me it's just a possibility. And I know that some people claim they can 'cure' Hashi's with diet and life-style changes. But, the most important thing with Hashi's is that it is attacking your thyroid gland, and destroying it little by little.

That means that you are defecient in thyroid hormones to some degree - we don't know how much of the gland has been destroyed, how much damage has been done. You cannot live without thyroid hormones, that much is certain. It is just a question of how much you need to live a decent life. Therefore, until further notice, what your body can't produce, you have to replace. There is no way round that. A vitamin cannot replace a hormone.

The reason I mentioned vitamin and mineral deficiencies was because most people with low thyroid have them. When you are hypo, your stomach acid gets low, so you have difficulty digesting food and absorbing the nutrients. But that does not mean that that could be your only problem. It won't be, but it will make things much worse. Vitamins and minerals, whilst important, are not magic cure-alls. One just replaces what's missing, as with hormones (another thing that doctors don't get!). When everything is optimal, you feel good. Take a bit of something away, you feel bad. That's all.

So, whilst optimising your vit and min levels will probably make you feel somewhat better, it won't be all that you need because of the damage done to your thyroid gland. Also, the only way I know of to stop the upping and downing of levels due to antibodies, and stop further damage being done to your gland, is to suppress the TSH. (Yes, some people do it by going gluten-free, but that doesn't work for everybody.) And you can only suppress your TSH by taking something like Levo - i.e. thyroid hormone replacement (NOT 'meds' or 'drugs!).

So, why don't doctors know about symptoms? Simple. Because Big Pharma doesn't want them to! BP makes a fortune out of selling drugs for our symptoms - statins, blood pressure drugs, weight-loss pills, proton pump inhibitors, beta blockers, ad infinitum. If doctors knew that these were just thyroid symptoms and upped your dose to get rid of them, then BP would lose a fortune! And BP controls your doctor because it controls what they learn in med school. And doctors don't seem to have any curiosity and just accept what they're told as gospel and don't do any thinking for themselves. Well, the majority don't, anyway. Thus, we get bad treatment and ridiculed for our concerns and inquiring minds!

Follow the money! Always follow the money. Ask yourself 'who stands to gain?' And it usually turns out it's... Big Pharma!!!

Sheepcoat profile image
Sheepcoat in reply to greygoose

Yes, that is very true, everything that happens down below is all hormone related. Gynos just seem to concentrate more on physical problems such as tumours, cysts, deformities etc, rather than hormonal issues. But they should certainly have some knowledge of what can cause lack of cervical mucus or erratic periods or anything else hormone related!

After doing research, I came to the conclusion that I had Hashimoto's so thanks for confirming it. But what I don't understand is that you said I am deficient in hormones to some degree, but why does it appear that I have symptoms of hyperthyroidism? Then again, I think I may have symptoms from both hypo/hyper symptoms! My hormones have just gone haywire...about 5 years I was totally over-sexed to the point it was having a negative impact on my life and was over-producing cervical mucus, and now I've gone the exact opposite way!! You also said that being hypo means under-digesting food, but I have got a fast metabolism at the moment and wake up starving some mornings. But about 5 years ago, I had terrible IBS and constipation.

I totally agree about the pharmaceutical companies controlling what doctors know. I've read a lot about this sort of thing in the past...there must be tons of people out there being treated for all kinds of ailments when all that's wrong with them is thyroid disease. I've read all about the knock-on effects thyroid disease has on other parts of the body, and I know for sure it is affecting my blood pressure, metabolism, periods and kidneys, but doctors won't believe/accept that thyroid disease can cause these problems and just think people are hypochondriacs. I think people know their own bodies and it is obvious to me that my multiple symptoms are all caused by the same disease. And yes, it's always about the money... I also think that if I were rich I would be being treated by now because could pay the best doctors to sort it out!

greygoose profile image
greygoose in reply to Sheepcoat

You probably do have both hypo and hyper symptoms. Because you have Hashi's. Hashi's swings from hypo to hyper, with sometimes periods of normality inbetween. That is because as the antibodies are destroying the thyroid, little pièces detach from the gland, full of hormone, and the hormones flood into the blood and make you hyper. But when you swing back to hypo, you're even more hypo than you were before, because there is less and less working gland. These swings can vary in length and severity according to the person. I'm pretty certain I've had this all my life yet still have a little bit of working gland left. And I had years of what might be called 'normal' around my late twenties until mid thirties. Another person might swing on a monthly, or weekly, basis. It's all very individiual.

But having said that, hypo and hyper symptoms cross over. There's no hard and fast line between what is one and what is the other. For instance, people think that hypos get fat and hypers get skinny. But a lot of people with hyper put on weight, and some hypos lose it. Same for blood pressure. I've had doctors tell me that I can't be hypo because my blood pressure is high and only hypers have high blood pressure. If I were hypo then I would have low blood pressure! But this just shows a basic lack of understanding of what thyroid disease is.

However, I wouldn't count on money buying you the best treatment! Look at Oprah! She had doctors treating her with soy!!!! And telling her that her Hashi's was 'cured' when she was just in a hyper phase. Total ignorance! Unless you were Lucky enough to get to see someone like Theirry Hertoghe - and there aren't many like him! - then you're just as likely to see an ignorant, expensive endo as an educated one. So sad.

Sheepcoat profile image
Sheepcoat in reply to greygoose

Hi Greygoose,

thanks so much for all this info- it makes so much sense and now I totally understand why my symptoms seem to be both hyper and hypo- I can even feel it when I go extremely hyper/hypo, but I seem to fluctuate in terms of days/weeks rather than months or years. I can be feeling very hyper on one day with twitching symptoms and constantly peeing, and then I'll go very fatigued and lethargic the next. My mom was the same as you- swinging to and fro for years and the doctors didn't know what to do with her. There just isn't enough understanding of the disease at all is there!

Well I went to see the endo on Saturday and she was a nice lady but she just told me exactly the same as all the other GPs/endos that I've seen- that she didn't think my symptoms are due to a thyroid problem(?!) Even though I have a goitre and my mom is now being treated for thyroid disease. I don't know whether she actually believed my symptoms weren't due to thyroid or whether doctors say it because they can't treat you when results are in the 'normal' range, or they don't know how to treat it. I mentioned how the ranges can't be right, but I was given a load of stats about how studies had been done on thousands of people etc. She also said that some of my symptoms weren't 'common' symptoms of a thyroid problem. She said a large portion of the population have goitres which don't cause any problems and also that my antibodies aren't significantly high. So she is basically saying my symptoms aren't related to a thyroid problem but doesn't know what's causing them...but if I went back in 5 years with exactly the same symptoms but my results were out of range, would my symptoms then be due to a thyroid problem or would docs still be saying my symptoms aren't thyroid-related?? Anyhow, she ordered lots of blood tests including thyroid receptors, vitamins B12 and D, and quite a few other ones, so we'll see what's what.

greygoose profile image
greygoose in reply to Sheepcoat

It's not a question of whether she believes it or not, she just doesn't know. Doctors are not trained to recognise symptoms. They are just trained to do blood tests - and even then, they don't really know how to interpret them - and hand out dangerous drugs - they're very good at that part!

If you have a goitre, it is because your thyroid is struggling. Quite how they manage to wriggle round that one, I just don't know. But it's a question of logic, and doctors have no logic. The majority seem to be incapable of thinking for themselves. The reasons for a struggling thyroid are various, but the fact that a large portion of the population have them is irrelevant. They man not have symptoms today, but they will one day! And what she said about ranges is just sheer wishful thinking! lol So, all in all, she's just like all the others - totally ignorant in all things thyroid. Such a shame.

As to whether they will still be saying that they don't know what is causing your symptoms in 5 years time when your TSH is higher. Quite possibly, yes! But, it dépends on the doctor, really, and the circumstances. If it suites them, they will say everything is down to your thyroid - even a broken leg or food poisoning - so that they don't have to look any further. But if they don't want to prescirbe T3 or increase your dose, then nothing will be down to your thyroid! They count on people's ignorance to get away with murder - literally, sometimes!

So, good luck with the blood tests - but be warned - 'optimal' is not part of a doctor's vocabulary, so if your results are anywhere in the 'normal' range, they will say it's 'fine' or 'ok'. When it isn't! For B12, you need to be at least 800. Mine was about 250 and the doctor said it was 'perfect'. Not!

stopthethyroidmadness.com/l...

The trouble is, unless it's out of range, they won't do anything about it, so you have to prescribe for yourself.

Anyway, keep us posted!

Hugs, Grey

Sheepcoat profile image
Sheepcoat in reply to greygoose

Hi Grey, I am amazed at the lack of knowledge and understanding by doctors and that they all seem to think in the same way. I think that sometimes they might be worried about prescribing when results are in the normal range because they don't really know whether they are treating under or overactive and haven't got enough knowledge to work it out. Or perhaps sometimes worried about repercussions- after all, if they prescribe something when results are coming up 'normal' and it causes the patient to have ill-effects, the patient then may have grounds to sue! Yes, I knew she was totally ignorant in thyroid illnesses as soon as she said 'I don't think you have a thyroid problem'! I just wanted to go aaaaarrrrggh!

Surely there must be some good, very knowledgeable endos out there who will prescribe even when results are showing as 'normal'?? I won't stop until I find one! When you say you have to prescribe for yourself, do you mean with vitamins and herbal treatments and diet etc?

greygoose profile image
greygoose in reply to Sheepcoat

Well, there is Dr P in England. Not sure where. And Dr Hertoghe in Brussels, and Dr Dalle in Paris. Although none of them are actually endos, they are knowledgeable. And, l believe there are quite a few knowledgeable doctors in the US, although l can't quote you any names off hand.

Yes, l have worked out a vitamin and mineral regime for myself which seems to work well for me. I'm very wary about herbs. I've done some reading about them but it's difficult, and they can make things worse rather than better if you don't know what you're doing.

As for diet, well... l think the less l say on that subject the better. Lol One thing is certain, I'm not a great fan of food in general, and things that are supposed to be good for you in particular! I tried gluten free and that didn't do anything for me. And l don't like meat enough to do Paleo, although l sometimes force myself to eat it because l know l need it but... l do eat a lot of butter, cheese and eggs in an effort to raise my cholesterol, but it doesn't work.

No, actually what l meant was that l prescribe my own T3. I get it on internet and l take the dose l know l need, because l know my own body. I'm not having some thyroid-ignorant doctor telling me how much he's going to allow me to take as if he were paying for it from his own pocket! And reducing my dose because my TSH is suppressed and he doesn't have the knowledge to dose by the frees and symptoms. I have taken charge of my own health. I gave doctors several fair chances to make me well and several times they nearly killed me. It's a wonder to me that so many people manage to survive! They must have stronger constitutions than me. Lol

greygoose profile image
greygoose in reply to Sheepcoat

Well, there is Dr P in England. Not sure where. And Dr Hertoghe in Brussels, and Dr Dalle in Paris. Although none of them are actually endos, they are knowledgeable. And, l believe there are quite a few knowledgeable doctors in the US, although l can't quote you any names off hand.

Yes, l have worked out a vitamin and mineral regime for myself which seems to work well for me. I'm very wary about herbs. I've done some reading about them but it's difficult, and they can make things worse rather than better if you don't know what you're doing.

As for diet, well... l think the less l say on that subject the better. Lol One thing is certain, I'm not a great fan of food in general, and things that are supposed to be good for you in particular! I tried gluten free and that didn't do anything for me. And l don't like meat enough to do Paleo, although l sometimes force myself to eat it because l know l need it but... l do eat a lot of butter, cheese and eggs in an effort to raise my cholesterol, but it doesn't work.

No, actually what l meant was that l prescribe my own T3. I get it on internet and l take the dose l know l need, because l know my own body. I'm not having some thyroid-ignorant doctor telling me how much he's going to allow me to take as if he were paying for it from his own pocket! And reducing my dose because my TSH is suppressed and he doesn't have the knowledge to dose by the frees and symptoms. I have taken charge of my own health. I gave doctors several fair chances to make me well and several times they nearly killed me. It's a wonder to me that so many people manage to survive! They must have stronger constitutions than me. Lol

Sheepcoat profile image
Sheepcoat in reply to greygoose

I think I've got a list of good endos who were recommended by Thyroid UK but none of them are near me, so I will email them and see if there are any in or near Birmingham. The endo I last saw in Birmingham is being fairly helpful even though she doesn't think my symptoms are thyroid related. She sent me for another ultrasound, but the sonographer just said I've got a few tiny cysts and nothing to worry about, and that nothing is pressing on my windpipe. I've also got to have a breathing test as I struggle to intake oxygen sometimes and get a slight choking sensation every couple of days for short periods. The endo also tested my B12 etc so I'm still waiting for these results.

I don't blame you taking charge of your own health. I think I may end up doing that if I can't get an endo to help me. I am determined to get better and won't stop until someone helps me- even if it means self-medicating. I'm sure there must even be people out there who are a lot worse than me, but everyone is affected in different ways it seems. If my fertility and libido were normal, I wouldn't be so bothered about the fatigue, palpitations, cramps and frequent urination! But some people on here say they can't even get out of bed or function sometimes...that must be awful. But then again, so is not being fertile or being able to have a relationship and children!

greygoose profile image
greygoose in reply to Sheepcoat

Yes, it must be horrible for you.

Have you had your sex hormones tested? You might be low in testosterone. Your thyroid hormones are messed up, so all your other hormones will be too, to a greater or lesser extent.

So, your endo appt wasn't a great success. She's thyroid-ignorant. Figures. I think your B12 etc tests are going to show that you have nutritional deficiencies. However, for a doctor, everything 'in range' is 'perfect'. Which is wrong. As with thyroid hormones, it's not being 'in range' that counts, it's where in the range it falls. So if your B12 is at the bottom of the range, they're not going to do anything about it. You'll have to supplement for yourself. Best to post your results on here and let the others advise you on suppléments.

hugs, Grey

Sheepcoat profile image
Sheepcoat in reply to greygoose

Hi Grey,

yes I had my sex hormones tested a few years ago and according to the endo I had at the time, they were 'normal'. But he didn't even tell me to get bloods tested at a specific point in my cycle. Anyway, I worked out that the hormones were either below range or very low for the particular point I was at in my cycle. My testosterone was low at 0.7 but my GP said if I had testosterone injections I might end up with a beard! But I would rather just treat the cause of my symptoms rather than just individual hormones or symptoms. I did try the contraceptive pill but it didn't do anything, and my symptoms started when I was still on it. And yes you're right- I think because my thyroid hormones are messed up, all the other ones are also messed up. I've just been reading something about the parathyroid- would this entail different blood tests to the usual TSH, T3 etc?

Yes I will definitely post my vitamin results on here :-)

Thanks,

Sheepcoat.

greygoose profile image
greygoose in reply to Sheepcoat

Yes, of course, treating the root cause is the thing to do - providing you know what the root cause is and that there is a treatment.

In the meantime, low hormones are contributing to your general ill-health, and your general hormonal imblalance.

Things are rarely just black or white. Also, it dépends how much damage has been done to whatever gland. For example, you may be able to get rid of your Hashi's antibodies somehow, but the damage to your gland will have been done and you will need thyroid hormones.

Low levels of hormones are not just 'symptoms', they are causing the symptoms. And your doctor is/was an idiot! Giving you testosterone injections in not going to make you grow a beard unless he grossly over-doses! Doesn't he know that women need a certain level of testosterone too??? Where do they go to school? I ask you!

Sheepcoat profile image
Sheepcoat in reply to greygoose

Yes, finding the root cause is my priority which is why I've always been reluctant to try testosterone etc. My other hormones are also low, and I don't think increasing the testosterone would do anything about my cervical fluids, as it's oestrogen which controls that. By the way, the GP who told me I might grow a beard if I have testosterone used to be a gynaecologist!

All of the doctors I saw didn't really pay much attention to where I was in my cycle when I had the bloods taken. Because the hormone results were within the ranges, I was of course normal! Even though when I worked it out properly, my results were lower than what they should've been for that point in my cycle. I think the GPs know that it is thyroid-related really, but just won't treat it when TSH is normal. One GP I saw even said I am going to find it very difficult to find a GP who will give me thyroxine, so she must have known that's what's wrong with me.

humanbean profile image
humanbean in reply to Sheepcoat

Don't forget to get ferritin and iron tested too. Don't be surprised if the doctor refuses to do iron. It is very common. But getting the ferritin done is better than nothing.

Sheepcoat profile image
Sheepcoat in reply to humanbean

I've had ferritin and iron tested in the past and both were normal. Well, my iron actually came up high and the GP was calling me 'The Iron Lady'!

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