Thyroid UK
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Confused!

Hello,

This is my first post on this site and I was wondering what opinions others may have on my situation.

I have not been right for about two years (maybe longer), nothing specific - just tiredness, lack of energy, insomnia, dry skin and hair, loss of interest in life, no motivation, short fuse, various joint and muscle pains, hips feeling out of place, nausea after eating and drinking, excessive sweating, dizziness (with one fainting episode) and feeling as though I am ageing rapidly. I did not go to the doctors about any of this as I put it down to ageing (I am 57), the menopause, grief of losing my mum and relocating.

Things changed significantly in January this year. Out of nowhere I suddenly developed severe pain in my upper back and left arm with numbness and altered sensation in a few of the fingers on my left hand. I was in absolute agony for a couple of months (day and night) and no medication or anything else I did eased the pain. I visited the GP a couple of times but gave up as nothing they gave me helped. I was at my wits end and needed to do something so I went to see a chiropractor. They did an x-ray and found I had mild arthritis in my cervical spine; this led them to suggest that my severe pain had been caused by nerve impingement in my neck. I had eight chiropractic adjustments, but ceased treatment when I developed pain in my left shoulder.

I went back to my GP and was referred to Musculosketal Physiotherapy. During this time my back and arm pain had become more manageable, but the shoulder pain was increasing and becoming unbearable. I was having difficulty washing and dressing, my range of motion was restricted and both passive and active movements were much reduced.

After being assessed by a specialist physiotherapist, I was referred for urgent physiotherapy on my left shoulder and for an MRI to try and find out the cause of my back/arm pain. The physio thought it was due to degenerative disc disease (a natural part of ageing). They were unsure whether the shoulder and back/arm pain were related.

I attended 3 physio sessions for my shoulder and did all the exercises given. I had a small improvement in my range of motion but the pain didn't go away and activities of daily life remained difficult and were restricted. Prior to attending the first physio session, I developed tenderness around the base of my thumb on my right hand (with no injury). The pain increased to the extent that I was wearing a wrist support 24/7 with no improvement. I mentioned this to the physio, but they said they were treating me for my shoulder and needed to sort that first. They put the pain down to over use as I had been unable to use my left side due to shoulder pain. I didn't feel this to have been the case.

I also found I had nodules and thickened tendons (?) on the palms of both hands and on the sole of my left foot. I mentioned these to the physio, but they had no idea what they were. Online research suggests this may be Dupytren's Contracture.

I have now had my shoulder pain for about 4 months and my wrist pain for 3 months. My right shoulder is also beginning to develop the same problem. Sleeping at night is difficult due to the pain and I cannot sleep on my left side. It feels like frozen shoulder.

When I get up from sitting in the evenings I find I struggle to walk; my knees, ankles and feet all feel stiff and painful. I used to hobble, but it has got progressively worse and I now often have to shuffle/slide my feet along the floor because they won't work properly. I feel like I am 90 years old!

The results of my MRI showed very mild arthritic changes in the neck with a slight narrowing of one disc. These changes would be seen in most people of my age. I am now wondering whether my trapped nerve was in my shoulder area rather than my neck. I did wonder this at the time, particularly as I never actually had any neck pain.

The physio referred me back to the GP because of my developing multiple joint pains, thinking that there may be something inflammatory going on. The GP assessed me very quickly, but asked virtually nothing about my symptoms or history. My appointment lasted about 5 minutes. After months of pain with no explanation, I had turned to the internet to try and find out what the possible causes might be. I came across thyroid disease and my symptoms seemed to correlate well with an under active thyroid. My mum had thyroid disease (albeit over active) and my sister also gets tested regularly for it because of this. The doctor did not ask about my family history.

The GP ordered a blood test and talked about arthritis, I had considered this but ruled it out as my symptoms didn't really fit. I raised the thyroid issue and this was added to the blood tests. I have a feeling that this would not have been tested for if I hadn't have mentioned it.

The results came back and everything was marked NO ACTION. I was just told (by telephone message) that they wanted to repeat the Thyroid Function Test in 3 months time. I was puzzled by this as I had been told there was no action needed and everything was normal. I therefore went to the surgery and asked for a copy of my results.

All the inflammatory tests came back negative. My TSH was out of range at 5.1 (0.40 - 4.5mu/L) and my FT4 was towards the bottom end of the range at 10.1 (7.0 - 17.0pmol/L). I have read that people often function best when FT4 is towards the top of the range.

Due to my level of pain and the length of time that I had been suffering, I decided that I did not want to wait another 3 months and went back to my GP (I took my partner with me as I readily accept what GPs tell me but he is more persistent).

NICE Guidelines state that symptomatic patients under 65 years of age with a TSH between 5 and 10 and normal FT4, should be given a trial therapeutic dose of levothyroxine. My results indicated that I was in this category so I didn't anticipate any problem when asking for some trial meds. At long last I had found the cause of my joint pain and I was going to be able to get my life back, I would be able to hang out my washing to dry, hooray. How misguided I was to even think that!!

The GP was incredibly reluctant to give me a trial dose. I was told that I was only slightly out of range and that all my other tests were normal. I was also told that my symptoms were not suggesting thyroid dysfunction. I asked what people normally complained of and was told weight gain, constipation and tiredness. I had mentioned the tiredness and also mentioned how this had recently got much worse. I also said that I had gained weight and found it impossible to get rid of it. I had not suffered from constipation but had had a change in bowel habits (less regular and from daily to sometimes every other day).

I had written a list of all my symptoms but felt too embarrassed to show them, it was a huge list and I thought she would think I was being a bit of a hypochondriac or trying to convince myself there was something wrong with my thyroid. I didn't mention all the other things because my main problem was joint pain. Also I would not have gone to the GP complaining of tiredness and weight gain because I didn't think there was anything wrong - just part of getting old, stress or the menopause.

I have the brain fog thing and am also much clumsier - drop stuff, bump into things. I have lost the hair on my arms and big toes, my hair has lost it's shine and I no longer look like a lion (my partner's words), I fall asleep watching TV, my arms are weak and I find it difficult to get out of bed because my arms will not support me, I wear loads of layers and sometimes have to have a hot shower as I cannot get warm, I have little or no interest in sex, mood swings, always snapping at my partner, loss of interest in stuff, don't want to go anywhere or do anything, feel like I've got PMT a lot of the time, dry skin, cracked heels, more OCD than normal, bouts of dizziness and acid reflux from time to time.

This is a long list of symptoms and I am aware that they may not all be related or significant. I have listed them in case someone else finds them useful.

Despite my biochemical results suggesting an underactive thyroid and me having a lot of the symptoms, the GP was in total disagreement. So we asked the question, if it wasn't my thyroid, what was it? The GP suggested gout, fibromyalgia or the menopause. The only likely one of those is the menopause in our opinion. If it is the menopause, why is my thyroid out of range?

I asked the GP, if the menopause was causing my joint pain, would it then eventually get better? I was told no. I then said, "So I will have to live with this for the rest of my life? I am only 57." They had no answer to this.

I couldn't understand why it wasn't a problem because my TSH was only slightly out of range? What is the point of having a range in that case and how far out of range does it have to be before it becomes a problem? I know some GPs will only treat when TSH is above 10. If you have symptoms with TSH 5, then surely that's a problem? Clearly not if your GP doesn't think your symptoms are indicative of thyroid dysfucntion.

There is a lot of information online suggesting strong correlations between frozen shoulder, wrist tenosynovitis and Dupytren's contracture - all of which I seem to have. The GP didn't seem to think these symptoms were relevant and more or less ignored them.

Anyway, I am now on a trial dose of levothyroxine but have only been given 25mg/day so am not sure whether this will be effective or not. It was a real battle to get that and it was only because of my partner's persistence that it was prescribed.

I am confused after seeing the GP. Do I have a thyroid problem or is it the menopause or something else? If it is the menopause, why is my TSH elevated and my FT4 on the low side?

Just wondering what people on here think. I apologise for the lengthy post but I needed to give a full a picture as possible. I also thought it might help others who find themselves in a similar situation.

All I want is to get my life back.

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Sadly your case is far from unique

Would suggest you get full Thyroid and vitamin tests privately after 6-8 weeks on 25mcg Levothyroxine

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus very important to test vitamin D, folate, ferritin and B12

You could test vitamin D now via vitamindtest.org.uk £29 NHS postal kit, or go back and see GP to request all four vitamins are tested. But may be best just to do privately

Thousands on here forced to do private testing as NHS often refuses to test FT3 or antibodies

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased.

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Thank you for all that helpful information/guidance. I have decided that I will get a private blood test done as it seems to be the easiest way to get everything tested. I am not sure I can face more 'battles' with GPs...and I am only at the start of my journey. The stories on here make for difficult reading; so many people suffering and feeling ignored, frustrated (and stupid for even thinking they may have a thyroid problem!) The current situation is quite appalling, the same stories repeated over and over.

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Hi Pippycat

I had similar results to yours (tsh and t4) and now take 100mg of thyroxine and my tsh is about 1.6 now after about 2 years of therapy. I’m lucky I had a decent GP, might be worth seeing different GP’s if you can until you get the appropriate therapy. 25 is so low. Good luck x

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Thank you, it's good to know you have been treated effectively. Decent GPs seem to be the exception rather than the rule in my experience. I say this not just because of my own current situation, but because of the way my mum was treated prior to being diagnosed with advanced stage 4 cancer. She complained of not feeling well for several years, but was ignored and repeatedly sent away saying it was her age and nothing to worry about. She died three months after being diagnosed and we felt robbed. I have seen four different GPs so far - I just take pot luck. If I want to see a specific GP I have to book ahead and normally have to wait one to two weeks. I can't always wait that long because of my pain level, so I tend to phone in the morning to get an appointment that day and just see whoever happens to be available. Healthcare is a bit of a lottery generally these days.

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25 mcg is too low, but I understand you had a struggle to get it.

Normally, doctors don't diagnose after one elevated TSH, because the TSH can be elevated due to other reasons than an under-active thyroid - TSH is not a thyroid hormone, it is a pituitary hormone, and can be elevated due to things like a virus, or something. So, a second test is in order, after a gap to allow the other possible causes to go away, to see if the TSH is still elevated.

But, in any case, there is nothing a doctor hates more than diagnosing someone with an under-active thyroid. If they can, they will diagnose you with hyperthyroidism, but don't want to know about hypothyroidism. And, they know nothing about thyroid symptoms except the ones she cited. There are over 300 hypo symptoms, and they know about three of them, if that!

And, starting you on too low a dose is a ploy they often use - either consciously or subconsciously - to persuade you that it isn't your thyroid that is causing the problems! Too low a dose can cause you to feel worse, because it's just enough to stop your thyroid's production, but not enough to replace it.

When did she tell you to go back for a retest? It should be in six weeks from the time you stated the 25 mcg. Did she tell you 3 months? That's too long, and another ploy! Go back after six weeks and tell her you want a retest now, because although you feel better, you really feel you need an increase in dose…

When you go for your retest, makes sure it's early in the morning, and fast over-night. Leave a 24 hour gap between your last dose of levo and the blood draw. Your doctor won't tell you about that, it's a patient-to-patient tip. :) And, it's possible that your TSH might be even higher. That's learn her!

By the way, the ranges are totally unrealistic. You are hypo when your TSH hits 3. And, in some countries you'd be treated at that point. It's only in the UK that doctors like you to suffer until your TSH reaches 10! It has nothing to do with science, just cuts down on the number of people they're obliged to diagnose!

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All of what you say makes sense. The whole thyroid thing is so complicated and I can see why GPs might want to avoid the diagnosis/treatment thing. The GP was more or less saying I didn't have a thyroid problem as I was 'only just' out of range and my symptoms didn't match. I would have accepted this if my partner hadn't have been with me...although instinctively I feel there is a thyroid problem somewhere.

The three month retest was suggested before I had made the appointment to discuss the results. They said I can be retested at anytime, even within two weeks if I want, but that things would be unlikely to change. I think they said test within a month, but I may leave it six weeks. I will also get a private test done so that I can check other things too.

They have already said they don't expect the levothyroxine to make any difference!

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Out of range is out of range. It doesn't matter by how much. Given that you are hypo when your TSH hits 3, it is actually massively out of range. As for symptoms, he doesn't even know what the symptoms are, so that means nothing.

They have already said they don't expect the levothyroxine to make any difference!

Well, there you are! That's it in a nutshell, and they've as good as admitted it, there. They set you up to fail! Don't let them get away with it. Go back in six weeks, and say what I told you to say. Play them at their own game!

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Exactly what my partner suggested I do!

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He sounds like a great guy! :D

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It's concerning that they said 'they don't expect Levothyroxine to make any difference' .. . . Would that be so that they can tell you you are depressed and it is not your thyroid? Watch for this as they are very fond of saying that and like dishing out anti depressants! It could be the Levothyroxine is not working because you have conversion problems, they never think of that. Also some people react to the fillers and they cannot tolerate it.

Levothyroxine, Synthroid and Armour all block iron and calcium and so it is only a matter of time, before it no longer works for people. Levo is not the wonderful one size fits all wonder drug we are all led to believe.

Even with the subject of symptoms, they seem clueless and assume it's just a question of feeling tired, overweight and depressed. Hypothyroidism would not be so bad if it were just these three things but it is so much more. . . . . that is why there are so many Facebook thyroid groups.

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I downloaded a handbook on thyroid dysfunction and it lists 300 symptoms (as Greygoose pointed out above). If I take out the 50 or so symptoms that are not applicable to me (male, fertility and menstruation stuff), I have about 70 of the remaining 250 symptoms. Admittedly some probably won't be related and some are more minor than others, but surely SOME of them must be suggestive of an under active thyroid?!

The thyroid governs the way our entire bodies work right down to the cellular level and affects virtually every organ and physiological process. It therefore follows that any malfunction is likely to result in a myriad of different symptoms. Each individual's 'malfunction' will be different and will affect the body in different ways, and will display different symptoms and to a differing degree. I am not sure why GPs can't see this, it seems so obvious - even to me as a non expert. It is not just weight gain, constipation and tiredness.

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But there is one symptom that is starkly obvious and that is that when you lose the outer third of your eyebrows, it is the thyroid that has caused this. It CANNOT be explained by depression as Drs blame everything on that. Surprising how many people are walking around with a swollen throat, thinning hair and the missing outer third of their eyebrows. Spoke to a lady cashier in a shop today about the headline news re statins side effects and the fact that the government dietary recommendations for high carbs have been wrong for many years. She said 'Well, I am not on statins thankfully . . . I have a thyroid problem' . . . . . dont tell me, they have you on Levothyroxine and tell you, you are fine because your blood tests say you are fine, even though you still feel ill. Her face was a picture . . . . . . I told her I guessed because part of her eyebrows are missing. An interesting conversation followed!

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Would be interesting to see how many people are walking around with half their eyebrows missing.

I am not sure if my eyebrows have thinned, possibly...but I have lost all the hair on my forearms and hair feels thinner on my head. It's the sort of things you don't really notice until you look or someone else points it out. My partner said my hair isn't as shiny as it used to be. I put that down to the menopause.

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Look back at photos one two and three years ago and you may see a difference. Lost the hair on my arms, under my arms, on my legs and stopped sweating. Am only now beginning to feel prickly new hair in my scalp, a relief as more of my scalp was showing than ever before and it was thin and ratty. Even when freshly washed, it looked ratty and sparse.

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Tried looking back on photos, but always had a longish fringe so difficult to see/tell. I have always had quite thick eyebrows and used to neaten them up by running my finger along to align the hairs. I have realised that I have not done that for ages now.

Not shaving my armpits or legs much either, maybe they are all little clues. Got rough patches of skin on arms and one of heels is cracked - never had that before in my life. Again, I put it all down to the menopause and they aren't things I would have gone to see GP about.

It's easy for GP to dismiss all of this stuff as not being the 'usual' signs. There must be a reason for all of these changes. I thought I was just getting old quickly and all of a sudden!!

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No you are not getting old quickly and suddenly - all these things are relevant. The cracked heels too. I had them yet that is not normal for me throughout my life. However, now i am taking supplements & NDT, and have changed my eating to less carbs and gluten and wheat free with lots of healthy fats, my weight is dropping and my skin is moist and soft, nails long and strong. So I am doing something right. Have even started perspiring though have no underarm hair still and just a few eyebrow hairs but they are growing. Do hope you get your Levo raised by GP Pippycat89 as that is only the starter dose, keep us posted xx

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Sounds like you are doing really well.

I have never had cracked heels either - ever. Always looked after myself. It would be nice to think I could have 'normal' skin again.

Not fussed about the nails though as I am a bit of a DIY fanatic - ha ha!

My blood testing kit arrived today so will get that done next week (missed the post this week). Once I have the results I will look into sorting vitamins and supplements (and diet if I need to).

I will keep you posted. I am amazed how many people there are on here and how many new people join everyday...all with similar problems. It just isn't right.

X

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Hmmm . . . Doing well . . . . I can only say that sometimes it is good to share the good bits and not the chronic bad bits. Yes, I have soft skin but my Vitaligo has reactivated and I have been covered in hives for four weeks, they are raised, hot, itchy and bumpy. Everyday they are in different places but all over and in my scalp. The skin in my ear is trying to grow over the ear canal and I have had an ear infection this time round for 7 months, have now lost hearing in that ear. My adrenals are struggling so can't increase my meds. Heart racing if I have even the tiniest bit of stress. Etc etc . . .

When you get your vitamin levels, it will give you another piece of the jigsaw. It's a massive juggling game like spinning plates but everything is connected and needs to work in harmony. Drs see just one symptom and then go on to the next symptom but they know so little about auto immune problems, we are all really on our own as good health will not be ours if we rely on them. Don't give up and keep striving to be better, keep learning, it'll be worth it xx

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Thought you sounded well, but you still have a lot of horrid things going on don't you? It's not right how people are left to suffer.

I still don't know if I definitely have an underactive thyroid, doc thinks menopause or gout. TSH slightly above range and FT4 lower end of normal - can the menopause result in elevated TSH?

Time and more blood tests should tell me what I need to know.

Really hope you can get on top of your more chronic problems. We only get one ride on the Magic Roundabout and it's not great if it's a rubbish ride.

X

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I would say that if Drs even get the idea or notion that menopause caused TSH to be elevated (which I don't think it does), all women will be in trouble from age 35 years and upwards. They might then use menopause as an excuse not to even do T4 and T3 tests at all and that would be disastrous. Personally, i think that if menopause is blamed for people not feeling well, they should be testing sex hormones and checking whether there is oestrogen dominance as that makes the thyroid struggle also. I have noticed that Drs are trying to avoid testing people for anything if they can save money and prefer instead to just call you anxious. What good is that.

All your symptoms cannot be explained by gout so don't let him palm you off with that.

Hope your tests reveal something so you can become proactive and help yourself. Message me if you would like to anytime. X

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Thank you Furface x

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Hi Pippycat I was thinking about the numbers going up too so on the 3rd June I noted that there were 82,175 members and now on Saturday 23 June there are 82,882. That's an awful lot of people joining in just 20 days feeling ill through their thyroid. Jo xx

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Wow, that's quite amazing...and this isn't the only forum and loads of Facebook groups too. People obviously not getting the help they need and being dismissed/not listened to by GPs.

It's partly because many of the symptoms are not specific, easy to ignore them. I have some quite specific symptoms, but these have been dismissed too. There is a need for more evidence based research. You'd think that would be quite easy to get with the number of sufferers there are.

Perhaps this forum could generate it's own list of symptoms and publish it somewhere. All the symptoms are real and not in our minds.

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Hi Pippycat89. Have you checked out the info on Thyroid UK's website?

thyroiduk.org/tuk/about_the...

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Thank you Crabapple - yes I've seen that and it is a great help :)

Whilst many of the symptoms I have are quite characteristic of hypothyroidism (such as tiredness, brain fog, weight gain and hair loss), some of the other symptoms I have are either not listed on the Thyroid UK website (such as Dupytrens' nodules) or are not really specific enough. For example, I have what I believe to be frozen shoulder (adhesive capsultis) and wrist tenosynovitis. I also previously had nerve entrapment. I didn't know what was causing my multiple joint pains so took to the internet to do some research. I was surprised to discover that all of these things are quite often seen in conjunction with hypothyroidism.

I guess listing 'joint pain' as an umbrella symptom allows everything to be included and many will never have heard of adhesive capsulitis or tenosynovitis. I just found it helped me when things were specified a bit more; it allowed me, for instance, to rule out joint pain caused by arthritis. Arthritis (osteo and rheumatoid) can often be diagnosed by the type of pain, it's presentation and the joints affected. Osteoarthritis tends to affect weight bearing joints and rheumatoid the smaller joints in hands and feet. Shoulders can be affected too, but it is not typically listed with the symptoms. I therefore came to the conclusion that my joint pains were due to something else and my subsequent blood test confirmed this.

I also read somewhere that with hypothyroidism, cuticles on nails are often either absent or virtually none existent. I had not checked this before, but it definitely applies to me. Whether it relates to hypothyroidism or not is anyone's guess, there is not enough research.

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Sorry, do you mean half moons?

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Yes that's the ones :)

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Definitely a feature as far as I'm concernerned.

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Hi Pippycat. My depleted eyebrows were the final symptom I went to the gp with before they started me on thyroxine. I started on 100 in Aug 2015 and have had a rollercoaster ride getting the dose right. Oct 2017 I started taking 125. It may take more than 12 months but don’t give up on the thyroxin. Keep asking for more and get your vitamins in order and your symptoms will slowly disappear. Listen to Greygoose and Seaside Susie re vitamins.

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Thanks for the advice :)

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Hi. Don't take any supplements with biotin for 3-5 days before a throid blood test as it can screw up the test. I only learnt about this problem through this site and now have to disregard previous tests...expensive mistake! X

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Thanks for the tip. I am not currently taking any supplements as I want to try levothyroxine on it's own first. If it doesn't work I will start looking at other things.

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We start low and build up as results dictate but starting low is to get our bodiesused to the drug but your may not notice much improvement as it's pretty low but even them it takes 6 weeks to get each new increase fully into your body hence retesting after the 6 weeks. This should continue until you are on the correct dose for you.

I hope you have also been able to share your family history with your doctor.

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Not shared family history yet but will mention it at my next appointment. It might help, just surprised no one has asked!

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Those days have gone sadly - only time to look at the screen and declare you 'normal'

:-)

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Bring back the days (I wish) that the doctor who delivered you really was a family doctor who knew the family group and would be aware of possible problems!

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The world has changed and continues to change in so many ways...not all for the good. You sometimes wonder where it will all end.

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Your story / symptoms is almost identical to mine. I was put on 50mg Levo, trusted Drs to know what they were doing, they kept me on 50mg for a year! I got more and more hypo and felt worse. So Dr said he didn't think it was Hypothyroidism but referred me to Endo (chocolate teapot) - Endo put me on 100mg Levo. Had 4 weeks on it, didn't feel any better so Dr stopped it. 4 week gap with no meds. Saw another Dr who re instated it. Another 4 weeks, but no better. Endo instructed Dr to stop it as I was no better. Had 9 years of nothing and deteriorating health, Fybromyalgia, M.E diagnosis but told I just had to live with it. Housebound then bed bound then adrenals crashed. Saw private dr who introduced me to NDT after diagnosing Hypothyroidism, Adrenal Exhaustion and POTS.

Please don't let them do the same to you. If possible, get your own tests done, vitamins really important as Slowdragon says and self medicate but above all don't trust your dr knows best. They don't. Xx

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What a horrid time you have had, nightmare! I hope you are better (in some ways) now.

You said don't let them do the same to you, but after reading peoples' stories on here I worry that the same thing will happen. As I said in my original post, I haven't been well for a few years but put it down to all I was going through. Since January things have got worse and I developed symptoms that are hard to live with. It even hurts when I try to put my dog's lead on and off. It is the simple things that make life difficult and frustrating, the GPs just don't seem to get this. They would understand a broken leg, but who is going to be empathetic when you say you struggle to put the lead on your dog?

Your story of being housebound and then bed bound worries me. My partner keeps asking me to go camping (something we both love), but I have been reluctant to go because of my joint pain. I would struggle with helping to put the tent up and the thought of crawling in and out of the tent/sleeping bag with joints that are weak, stiff and painful doesn't bear thinking about. I also worry as it is getting harder and harder for me to get out of bed, there is little strength in my arms. I normally have to try and slide over the edge of the bed somehow. I have great difficulty turning the bedside light on and off - again, it is all the simple things.

It's a great help to know that many, many others are going though the same. I did feel stupid in front of the GP for thinking I may have a thyroid problem. My TSH is elevated so there must be a problem, surely?

Anyway, hopefully a bit more time and more tests/treatment will allow me to sort things out before they get too much worse.

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Everything you describe sounds all too familiar. I have an indoor cat and at my worst stage I had to crawl on my hands and knees from my bed to the kitchen to feed her then to the litter tray to change her litter, then to the bathroom (not to wash, no energy) but to sit on the toilet and wipe myself over with incontinence wipes before collapsing on the floor for half an hour before having the puff necessary to crawl back to my bed. Lots of bottles of mineral water by bedside kept me hydrated, friends would drop my 'grab and eat' food off . . . I am sharing this with you because this is what happened to me when I trusted Drs. Even at this stage, they told me I was depressed. Lastly, phoned them as I was having trouble breathing and requested an emergency phone call, half hour later the receptionist phoned me and said sorry, but a Dr couldn't phone me today as they had a real emergency. That was the last straw.

Thanks to a private Dr . . . . . . . . and friends half carrying me to the car to see him with head in a bucket, I am in a better place now and can bath and wash my hair on my own (what's left of it, it is sparse now). I am optimum with Folate, B12, Vit D and my iron levels are no longer rock bottom, eat clean food, gluten / wheat free and lots more help. Have read so much once I got the brain fog under control and am now headed in the right direction slowly, I walk with a stick, no longer crawl, am alive, glad to be so and guess what, I am not depressed though things are still fragile.

Be your own advocate and if you can afford your own tests, do so, learn, learn, learn, it may save your life. Be prepared to fight as this is what we all have to do. Be thinking of you, Pippycat 89 take care xxx

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You have had a horrible time, far worse than me - thanks for sharing that (I hope it helps to share). The good thing is that your life has improved but what a shocking state to leave you in!

I wonder what all these health care professionals would do if it was a member of their own family that was suffering?

Thank you for your support and advice, everyone on here has been brilliant - you all know so much x

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They would find a way to get them T3 or NDT just like the rest of us ; ) The difference is that they can probably afford theirs!

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I had symptoms similar to yours for years and also thought it was age,(I was in 50's then), finally went to dr when I could no longer turn over in bed without help, she tested for hypo when I told her my mother had it(hadn't rememberd this previously), and my TSH was then over 9, results and thyroid puncture confirmed Hashimoto. Endo dr said I'd obviously had it for some time, this was 2009 (I was 61). First given 50 of Levo and later 100 I started to feel better, less exhaused but this didnt help my arm and shoulder pain, ( I couldnt even brush my hair), then I started to read up on hypo/Hashi and found out about vits and gluten, same day went gluten-free and this was when my arm pains gradually disappeared and also incidently my life-long migraines, also got vits tested and started supps of vit B's and D, (this in 2012), now I am not perfect but almost (still supp. Vits and watch diet) and only need 75 of Levo, my TSH has been under 1 but I feel better around 1.50.

Sorry such long post but to give you hope that you can feel better.

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It wasn't a long post and was very helpful and informative. There is so much useful stuff on here and I hope that I may be able to help people similarly by sharing my story.

I can't brush my hair either!! I have long hair and have not been able to tie it up since all this started in January. I resort to having a plait at the side - but even this is difficult with my wrist. I cannot wash the top of my back in the shower and I struggle to get my cardigan off when I get hot - which happens a lot. (I alternate between hot and cold constantly). My partner normally has to help me take the cardigan off.

I am hopeful that I can sort this out, but I think my over riding feeling at the moment is one of doubt - and a negative state of mind will not help.

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If you think that your symptoms could be caused by the thyroid. Take a private blood test Blue Horizon Thyroid No 11. Take the test first thing on an empty stomach. If you are taking Levo leave this off for 24 hours prior to the test. Post the results on this site include the ranges for people to view and for advice.

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Thank you for that. I am planning to get a private blood test done in about six weeks time so will post the results on here when I have them.

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Make sure to include vitamin testing, including vitamin D, and yes best to test 6-8 weeks after starting on Levothyroxine

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Will do :)

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You mentioned above you were not on any supplements and wanted to try Levo on its own first. From reading here for years - it is well reported that all the vitamins mentioned - B12 - Folate - Ferritin - VitD - all need to be optimal for you to feel well and for thyroid hormones to work well in the body - so good to get them sorted quickly :-) They will be included in the Testing Bundle mentioned. It can make a big difference when vits and minerals are good.

B12 is good at 500 ++ - VitD 100 ++ - and Ferritin and Folate mid-range

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Oh ok, not thought of it like that. Maybe I need to do blood test now to see if I need vits/supplements as well. No point expecting levo to work if other things need to be optimal and they aren't.

The whole thyroid thing is such a complex pathway, so many factors to consider (and that's without the whole debate on tests, ranges and treatment). It's no wonder the GPs struggle really. It is possibly more about today's healthcare system today than GPs per se...having said that, some GPs are not great.

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If its possible to test vits and minerals then you could be ahead of the game 😊

Docs only struggle because their hands are tied by Guidelines laid down by people who are on the payroll of Big Pharma. Keeping everyone unwell or doped up with meds they do not need makes big dosh .... sad but true !

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It is very sad :(

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I wish I could argue but have loads of evidence and personal experience to back up the catalogue of neglect. I remember a time when Drs listened to patients symptoms but now they go by blood tests, the ranges of which are heavily influenced by drug companies and set so wide that by the time most people are not 'in range' they have become very ill indeed and collected other illnesses. Not treating thyroid issues go on to result in Diabetes, high cholesterol for which statins are prescribed, heart problems, Osteoarthritus etc . . . . . Much more money can be made for drug companies with thousands of people either undiagnosed or undermedicated on thyroid meds. This knowledge is out there and one or two MPs are aware of this but I can't help wondering how many are shareholders in big Pharma . . . . after all if they themselves need thyroid meds, they can afford to buy them unlike the rest of the ordinary people in the uk. I feel that is why T3 is not given freely (it makes many people well being the active hormone). The rest are subjected to one size fits all storage hormone T4 😕

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Here's a thought though, if we, mere patients with no medical training can learn, so could they if they wanted to to. If I were a Dr, I would want to feel good about helping my patients, that would have been why I signed up to be a Dr in the first place. The Specialists that patients get sent to also have little knowledge and it beggars belief, that they are sent away and left ill and denied medication they need.

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I couldn't agree more.

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This test thyroid 11 tests vitamins D, Iron, B12 Folate, and antibodies as well as the thyroid ones TSH, T4 and FT3.

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Sounds like me. I'm on 50mg Levo to see if they alleviate my symptoms. But also now have a heart problem and need a pacemaker. Make sure your heart is OK. As I have read undiagnosed hypothyroidism can do irreversible damage to the heart.

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I hope they raise your Levo in six weeks time and not keep you on that starter dose for a year like they did with me! Was so ill.

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As far as I know my heart is ok, but thanks for the warning :)

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I have just ordered a Blue Horizon Thyroid Eleven (finger prick) blood test. I have decided to do this to try and establish baseline ranges before spending money on vitamins and supplements (that I may not need). I am hoping that it will give me bit more of an insight as to whether I have a thyroid problem or not. If the results come back negative, it will still be money well spent as it will hopefully allow me to rule out the thyroid thing and look for something else!

Just wanted to say big thanks to all those who have given help and advice. I wouldn't be doing this if it wasn't for you guys :)

Free chocolate comes with the kit, nice little touch to boost my mood. Will post results for opinion as soon as I have them.

Thank you.

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Good Luck and let us know how it goes xx

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Start a new post with your results so more members see them. They may get missed here 😊 Hope all goes well.

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Good idea Marz. Wasn't expecting such a response - everyone on here have been so helpful 😀

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I don’t have much to add in advice but can say my GP started me out on 25mcg and I felt the brain fog improving. & had a few increments since. (I’m female 54 in the change etc)

I still have a long no way to go but at my last appointment I was waving a print out of the private testing others have advised telling the GP that I felt so ill I had resorted to private testing. I had previously posted results on here and the lovely folk helped me understand so I was equipped for my appointment - I got a dose increase 😃

And they have agreed to test T4 and T3 after 6 weeks.

All the best on your journeyx

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Thank you for responding, ALL advice is useful :) Good on you for taking control and getting what you need.

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I’m sorry to hear you’re not feeling well. I’m recently going through a Hypothyroid diagnosis. My TSH was over 16 and T4 was 6 and I have been started on 25mcg of Levothyroxine. I’m fit (apart from the usual terrible symptoms) and under 50, but my dr wants to start slowly - I can’t help you, but just wanted you to know you’re not alone! Like you, I want my life back. Good luck

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If you read the posts on here (and they are very good), you will see that 25mcg is probably too low as a starting dose for someone of your age, particularly as both your TSH your T4 are abnormal (I am assuming your T4 is abnormal as it is low, but difficult to say conclusively without knowing what range you were tested against. My lower range for T4 was 7 pmol/l and my result was 10.1 pmol/l - I was on the low side, but not out of range).

I think it's a slow road to recovery when you have a thyroid problem and some (it seems) never recover fully because they do not receive the right treatment. It's a bit of a battle ground.

I have been taking 25mcg for a week now and the one thing I have noticed is that my joints are not quite so stiff when I get up from sitting down. I am 57, but can now walk like I am 75 as opposed to 90, ha ha! I may be imagining it or perhaps the joint pain wasn't linked to a malfunctioning thyroid and it's pure coincidence...there are so many unknowns. I don't think it's a placebo effect as I wasn't expecting anything to happen.

Anyway, good luck with the treatment and hopefully we will both feel a bit better soon.

x

PS You should post your results here, everyone is great and loads of advice. They will tell you about all the vitamin and supplement stuff too - it's a minefield!

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