Hello - I am new on this thyroid forum and a 70-year-old female. I have a question about my results and symptoms. I was in touch by email last October with a retired gp regarding my B12 as I thought I may need more frequent injections owing to symptoms (I am on monthly jabs) and was preparing to inject myself, and he happened to ask for my thyroid results, which I did have. After several emails and a phone call, and now subsequent emails recently, his diagnosis is severe underactive thyroid/Hashimotos. Before Christmas, my gp said she would arrange for an endocrinologist. I have just attended an appointment and the doctor turned out to be a Consultant Physician and Geriatrician! Of course, he focussed on my saying my memory is not so good, and consequently I am scheduled for a CT scan. On the piece of paper I took out to reception at the hospital it said 'MRI Dementia ?' This is not what I expected to happen. I also have an enlarged kidney. In 2003 my TSH was 4.5 miu/L (range 0.3-5) and I have had 14 TSH tests altogether since then. Only 3 were 2.5, 1.9 and 2.5; 4 others were in the 3's and the rest (so half of them [7] ) were in the 4's and high 4's, going up to 5 in July 2012. My last TSH test in November 2018 was 2.5 which is why the consultant probably didn't take much notice of my various symptoms. My gp did mention a few years ago about sub-clinical hypothyroidism, but I didn't take a lot of notice. It was only after I rang the retired doctor who alerted me to the fact that Pernicious Anaemia is a poly-glandular (endocrine) syndrome that I started linking up my symptoms with possible hypothyroidism. My serum free T4 has varied from 13pmol;/L (range 9-25) to 15 at the last test in March 2018. I have had a TPO antibody test through my gp in December 18, results <20 iu/mL (<60.0) but I don't really know what that means - no antibodies I think, but I believe this test can be unreliable? In Nov 18 my creatine kinase was 187 iuL (25.0-200.0) and creatine 58umol/L (60.0-120.0). I have had many symptoms over the years but always thought it was just part and parcel of getting older or a link to B12D. My HDL cholesterol is 2.4 mmol/L (range 0.9 -2.2) which I think is ok as it is the 'good' cholesterol and my LDL 2.8. I have had many symptoms coming and going, some consistent.
Muscle aches and pains - throbbing in arm muscles enough to keep my awake at night. A feeling of my arms having become weaker in the last 18 months - can't lift so many things. At pilates yesterday, a move I could do easily in December 18 I now can't do - lying on my front and lifting the front half of my body up onto my arms. I told my own gp about my arms about a year ago. Very bad nails for as long as I can remember, sore scalloped tongue and constant sore mouth (was diagnosed with burning mouth syndrome some years ago). Cold hands and feet - always suffered but has got worse and diagnosed Raynauds Feb 18 - my hands went navy blue recently when we were out in the cold. Cold when everyone else is warm. Unable to regulate temperature - cold all day mostly, even in summer but get very hot in bed at night. Some weight gain - about 4 pounds. Croaky voice or sometimes just a bit raspy. Very dry mouth, tongue gets stuck to the roof of my mouth in the night quite often. Strong tingling in back of throat, sometimes dagger-like makes me want to cough. Dizzy turns on and off - head swims. Never hungry for about a year. Ongoing bowel problems - either constipation or diarrhoea. Hands that peel from time to time. Persistent nausea which I always thought was due to B12 as it got worse before an injection was due - had that for about 16 years but got worse in past few months and doesn't go away. I have peripheral neuropathy in feet. Struggle with words quite a lot and remembering what I was going to do at any given point. I know we all do this, but it seems more frequent - cross the room and can't remember why quite often. Insomnia for 30 years, choking on saliva on and off. I may have more than one thing going on because of the enlarged kidney. I haven't got the terrible tiredness that can accompany hypothyroidism but get intermittent 'collapses' where I just have to sit on the sofa for half a day or a whole day till bedtime. The retired gp I am in touch with suggests a morning fasting cortisol test - what does this show? I am sorry this is a long post, but I would like to know anyone's opinion. Many thanks.
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There’s a lot of symptoms there. Whatever your MRI shows I would insist on thyroid treatment to see if there is any improvement in your symptoms before accepting any other treatment. An undertreated thyroid condition can cause poor sleep and both can cause dementia symptoms. (As well as many of your other symptoms). Medicine is an art as well as a science. You need a good doctor who can think outside the box. Good luck
Autoimmune Thyroid Disease also called Hashimoto's is the commonest form of hypothyroidism. The antibodies attack the thyroid gland, and wax and wane until you are hypothyroid but treatment is the same, i.e. levothyroxine.
All blood tests for thyroid hormones have to be at the very earliest, fasting and allow a gap of 24 hours between last dose of levo and test and take afterwards. Levo should be taken, usually first thing on an empty stomach and with one full glass of water and wait an hour before eating.
Going gluten-free can help reduce the antibodies which attack the gland until you are hypothyroid.
A Full Thyroid Function Test, always the earliest and fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards.
A Full Thyroid Function Test is:
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. You can get a private one if GP or lab wont do all of them.
B12, Vit D, iron, ferritin and folate should also be checked for deficiencies.
The aim is to get the TSH to 1 or below with Free T4 and Free T3 in the upper part of the ranges.
Always get a print-out with the ranges for your own records and you can post if you have a quert.
Thank you. I always do get my printouts, which is useful. I was diagnosed B12 deficient 9 years ago but suspect it was long before then as I was hospitalised in a mental health unit for 4 months 24 years ago and then 3 months the following year, was extremely anaemic on admission. I was borderline severe for Vitamin D 4 years ago but now have my levels up from 15 to 200 - I take Vitamin D3, K2 and Magnesium every day. Was also zinc deficient. I had everything to do with B12 checked at Guys last summer (I paid). I haven't had the full thyroid panel, but not sure gp will do them but I don't mind paying - is there a recommended place for this, or should I just google it? Thanks.
Are you taking Folate/B9 or a good B Complex ? B12 works with Folate in an important way. Helps to hold onto B12 in the body longer too - I have read. I self-inject B12 weekly as I am without a Terminal Ileum !
Testing the T3 is the most important thyroid test for the full story ...
Hi, I hadn't started taking folate until about a year ago as I never knew it was a co-factor. I was taking other things - Swanson Ultra Maximum Potency Benfotiamine - 300mg, 60 Vegetarian Capsules, although stopped those now and Swanson Coenzymated B2. I take Jarrows methylfolate 400mcg, though am spacing them out now as folate gone above range in blood test. Many thanks.
I have had a TPO antibody test through my gp in December 18, results <20 iu/mL (<60.0) but I don't really know what that means - no antibodies I think, but I believe this test can be unreliable?
What it means is that the test is negative. There are antibodies, but not enough to constitute a diagnosis of Hashi's.
It's not so much that the test is unreliable, it's that antibodies fluctuate. So, just because they were low when this test was done, doesn't mean they were the week before, or will be next month. You cannot rule out Hashi's on the basis of one negative antibody test.
So, I'm wondering on what your retired GP based his diagnosis of Hashi's?
You are hypo, that's for sure. You're hypo when your TSH reaches 3. But, I wouldn't call it 'severe'. We'd know more if you posted complete results with dates, results and ranges. eg;
March 2017
TSH 3 (0.3 - 5.6)
FT4 14 (12 - 22)
Have you ever had your FT3 tested?
Interesting that your doctor suggested Central Hypo. Pity he didn't follow it up. And pity that he sent you do a geriatric doctor and not an endocrinologist! I would have been most insulted - I'm 73 - and probably would have given the so-called specialist a piece of my mind and walked out! No-one suggests I have dementia and gets away with it! lol
Not only can low T3 affect your brain function, but so can low B12. Pity doctors don't know anything about that. Do you have Pernicious Anemia? If so, that could be why your retired GP diagnosed Hashi's, because they're both autoimmune diseases, and autoimmune diseases tend to hunt in packs!
Anyway, the important thing is to get your present GP to take your hypothyroidism seriously, and get you onto thyroid hormone replacement as soon as possible. And, you might have to assert yourself and do a bit of nagging to achieve that!
Hi, thanks. I thought it did mean the test was negative, i didn't know the antibodies fluctuate. Re the retired GP i think it is because i have pernicious anaemia, which is on my gp record though i tested negative for parietal cell antibodies and intrinsic factor antibodies, though I know one or both are unreliable.
I didn't know I was seeing or had seen, a geriatric doctor until the post-appointment copy letter arrived with his name and designation and I was surprised and annoyed. My GP retired at Xmas she never minded what information I brought with me or told her. The new one could be a new kettle of fish. I will take up the issue of why I saw a geriatrician and try and push for therapy.
Not had FT3 tested. Not sure what you mean about central hypo.
I will post clearer results tomorrow when on computer. No wonder I've felt off for so long, possibly longer than 2003 when we moved here. Cheers
Oh, I'm so sorry, I misread your original post. I thought you said your GP mentioned 'Central hypo', but what you said was 'sub-clinical' hypo. OK, well, 'sub-clinical' doesn't mean much, because they don't use the term in its true context. 'Sub-clinical' actually means that your bloods are off but you have no symptoms. Doctors these days use it to mean a TSH over-range, but under 10! Not the same thing at all. Your TSH was under 10, from what you've said, so that's all he meant.
It doesn't help you that the upper limit of that range is so rediculously high! But, in the UK, they fight tooth and nail NOT to diagnose people with hypo - hence the unrealistic range, I'm sure of it. And, even if you go over that range, they say oh, your TSH has to reach 10 before you're really hypo. Which is absolute rubbish!
One very important question, which I've probably asked before but forgotten, where all these tests done at the same time and fasting? Can you remember back to the beginning? Did you make a note of it? The TSH is highest early in the morning, and drops throughout the day. By how much, varies from person to person. But, we always recommend on here to get the appointment for the blood draw as early as possible - but before 9 am - and fast over-night. It's possible that eating and drinking coffee and tea can also lower TSH.
I ask that, because your TSH varies a lot from one test to another. Whereas the FT4 stays more or less stable. There's no sign of a lowering trend. But, the TSH can be erratic, even if always tested at the same time. The FT4 doesn't vary throughout the day, so a much better indication of a worsening thyroid. Such a pity they don't do the FT3!
Even so, your FT4 is very low. And there's always the possibility that the FT3 is even lower. But you would have to get that tested to know. I would suggest getting it tested privately, because I doubt you'll ever get it done on the NHS, who consider FT3 levels unimportant! It would also be worth getting your antibodies tested - although, frankly, it's rather unlikely you have Hashi's. And, if the FT3 is very low, then we have to consider Central Hypo due to your symptoms.
Central Hypo is where the problem lies with the pituitary (Secondary Hypo) or the hypothalamus (Tertiary Hypo) rather than the thyroid itself (Primary Hypo). For some reason, not enough TSH is being secreted to stimulate the thyroid to produce enough thyroid hormone.
Doctors know next to nothing about Central Hypo - if they've even ever heard of it! - and nothing about symptoms, so are no likely to look for it. It's down to us, I'm afraid.
Hi again. I thought my FT4 was ok as I thought 16 was a good level and it was 15 in March last year. In answer to your question, I could only look on last year's calendar and saw that in March 18 the blood test was at 10.15am and in November 18 at 9.50am, so I would have eaten by then.
I have had the antibodies test, you did comment on the results - <20 iu/mL (<60.0) There are antibodies, but not enough to constitute a diagnosis of Hashi's. It's not so much that the test is unreliable, it's that antibodies fluctuate. So, just because they were low when this test was done, doesn't mean they were the week before, or will be next month. You cannot rule out Hashi's on the basis of one negative antibody test.
The doctor appointment is Friday and although I have written a letter, I am not sure how to approach things when I get in there, especially as this is a new doctor for me.
Mid-range for the FT4 is 17, so 13 is pretty low. Yours is more often 13 than 15. And that was last March, so who knows what it is now.
TSH is highest early in the morning and drops throughout the day. So, if you do your tests at different times, you can't really compare the TSH results to come to any sort of conclusion as to where this is going - is there an upwards trend or a downwards trend. In any case, as I said (I think!), you are hypo when your TSH reaches 3. It's just that the NHS will not admit that.
Yes, I did comment on the antibodies, sorry.
I think your best approach to any new doctor is a wait-and-see approach. Present him with the facts: blood test results and symptoms. And see what he makes of them. If he appears lost, prompt him. If he starts pooh-poohing it all, insist on the symptoms. But, without getting pushy, let him know that you know what you're talking about. But, don't go in there, thumping on the table and insisting on your rights, because that will put his back up. lol
Thank you. I know with my previous doctor when I was pushing for more B12 jabs she was very amenable to listening to what I had to say (now on monthly), and yes, you are right, no good getting them all riled up!
Oh, just remembered I wanted to say that in the NICE guidelines it quotes:
I am looking at the NICE guidelines and something in there I pointed out to my doctor before she retired:-
" If TSH is between 4 and 10 mU/L and FT4 is within the normal range
• In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3-4 months after TSH stabilises within the reference range .
• In older people (especially those aged over 80 years), follow a ‘watch and wait’ strategy, generally avoiding hormal treatment. If a decision is made to treat, prescribe LT4 and recheck TSH two months after starting and adjust the dose accordingly. "
I was 65 and under when my TSH was over 4. She looked surprised at the guideline – perhaps I should take it in to the new doctor. Don’t want to appear an internet know-it-all though. The only thing I can think is that I didn’t relay any symptoms to her at that time.
I don't think that having read the NICE guidelines makes you an 'internet know-it-all'. lol Anyone can read them. Trouble is, if doctors dislike diagnosing hypo in general, they dislike it even more when the person is over 70! They just do not want to treat. I put that down to their lack of knowledge of thyroid. They feel out of their depth.
It might not have made any difference if you'd told your last doctor about your symptoms. They don't know anything about symptoms. But, who knows what goes on in a GP's head!
Hi again greygoose. I have just been reading the article by John Dommisse MD and on page 5 he talks about
"The other issue about the TSH test is the long time that it is taking most physicians, laboratories and medical journals to accept the newly recommended range of 0.3-2.5 as normal, which was set by the National Academy of Clinical Biochemistry (NACB) back in Sept 2002. Before that, the normal range was considered to be 0.40-5.00, based on a cohort of only 27 hospital workers in Edinburgh, set by Professor Anthony Toft, the lead researcher of that study. There was no evidence that this cohort of study subjects completely excluded anyone with mild hypothyroidism. Based on several epidemiological studies showing that TSH levels above 2.5mU/L were not normal, the hundreds of thyroid and lab experts from around the world who make up the NACB concluded that, rather than 0.45-4.5 or 5.0, the new range should be considered as 0.3-2.5. And of course this range only applies when there is a question of primary hypothyroidism on its own."
In that case, why does Thyroid UK send out an article by Dr Toft stating "If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless
serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH concentration."
This would be me, tpo less than 20 and TSH, as I detailed, going up and down and reaching 5 at one point, but not 10.
As you see I am confused with all this information. Even if the doctors starting treating me, it does seem a very complicated thing as I read that article to balance out the T3 and T4 - how do we ever know we are getting treated correctly?! I could take a copy of the Dommisse article with me to the doctor, but this new doc is an unknown quantity - perhaps I shouldn't appear too much of a know-it-all on my first visit - silly thing is, I am definitely not a know-it-all, just someone trying to understand my own health and working my way through a maze of information.
Dr Toft is not really a reference, and only to be used when it suits you! i.e. when you have high antibodies. Seems to me, he's rather a peculiar person, who changes his mind every five minutes about what is right and what is wrong. Personally, I wouldn't trust him as far as I can throw him! I certainly wouldn't consult him. But, he's been around for a long time - he's retiring very soon now, I believe - and has an elevated positon (can't remember what) so most doctors have heard of him, and are more likely to trust him than a researcher they've never heard of. But, I don't think you have to worry about Dr Toft. He got it all wrong!
How do you know if you're getting treated correctly? Because you feel better. Your symptoms have mostly disappeared. How you feel is far more important than blood test results. They are only a guide when you don't feel well. And you don't have to balance out the FT4 and the FT3. You need to have both where they make you feel well. It's not a question of balance.
But, I think you're right. First appointment with a new doctor, you should play it cool. See how it pans out. You can bring in the big guns later.
Hi again. Well, I have had my doctor appointment with the new lady GP and been pleasantly surprised. Such a very nice doctor - sorry, overused word, but she listened, looked at me, and asked me what I wanted from the consultation. I said to look into my thyroid thoroughly. She said she could do a Free T3 test but on looking at my records on screen it turns out I had one in November 18, it just wasn't on my patient record that I am able to access.
The result of that was 4.1pmol/L [3.5-6.5]. Is that an ok result?
Also, she said she wanted me to be satisfied with any outcome, so would request a fasting cortisol test. I didn't ask for it, she suggested it. I said I thought I might have to pay privately for these tests, but she said no, I can order it up, so that is good and I am having it done next week.
Regarding the TSH levels, she was only looking at the last one at 2.5 but I did say my history shows higher levels, but she said anything up to 5 is fine. I raised my eyebrows, but didn't say anything. Might have to go in with that at a later date. All in all, I am pleased so far with the new GP.
That FT3 is low. Mid-range is 5, and most people have an FT3 nearer to mid-range. Your TSH is low, considering that low FT3.
Doe she know that the TSH range should now stop at 2.5? There was a post about that earlier in the week. I'll have to have a look and see if I bookmarked it. Because that would be a far more realistic cut-off point. 5 is pretty hypo! So, that doesn't bode well, I'm afraid, no matter how nice she was, or how much she listened, if she doesn't know these basic facts, then she doesn't know enough to make you well.
Thank you for your reply. I have just popped upstairs to the computer as it is quicker to type than on the tablet etc. I am feeling a little scared really as all this is very hard to get my head round. I know what my symptoms are and they are pretty clear-cut to me - the consultant wrote 'vague symptoms' - I don't think they are vague at all. I've had ongoing symptoms for years and years, and now getting worse. My voice is definitely going hoarse, I can hear it and know I can't sing as well. I am not sure people can hear it yet when I speak but I can hear/ feel a difference myself. Sometimes it is worse and my husband does say my voice is croaky. I may have said I have given up singing lessons for now after 4 years as I feel like I have hit a brick wall mentally. At the moment, I am still going to choir but finding it difficult to practise - mental energy and voice-wise.
No, the GP obviously didn't know about the range stopping at 2.5 (as per a document I printed off by John Dommisse - is that the one you mean?) - is that what I should be quoting? I didn't take that with me as I just didn't know what sort of doctor she was going to be - receptive or not. I do all this research on B12d and now thyroid, following posts and trying to sort things out, but I find it pretty hard. We have lived in this area 17 years nearly and when I was first sent to a local hospital - can't remember why, they said I had psoriatic arthritis but then some years later changed their minds! I think this was to do with the state of my nails at the time - and they are still like it! Something I have never mentioned here or to a doctor is, I think I may have vitiligo. I have small, round white patches on my forearms. It doesn't look as extreme as the internet images, but definitely there. I seem to remember my dad having this and just thought nothing of it till recently. I see it is mentioned on page 12 of the NICE guidelines. The patches haven't changed much over time.
I am not sure where to go from here - I will have the fasting cortisol test and the CT scan being arranged by the hospital, plus the hospital is arranging an overnight heart monitor. I do feel the CT scan is a waste of NHS money though. I have developed tingling in my hands in the past two weeks, that is new. I already have numb feet and told my old GP ages ago I thought it was spreading upwards towards my ankles. I always thought before it was to do with B12D but perhaps could also be thyroid. There is nothing in the NICE guidelines that says the range stops at 2.5, is there? I couldn't find it. How can I argue my point if they go by those? Thank you so much for your ongoing help.
I think the consultant probably meant 'non-specific' rather than 'vague' symptoms. And that's part of the problem. Hypo symptoms are non-specific, because each and every one of them could be due to 'something else' if taken individually - which doctors do, of course. But, as I've said before, what are the chances that you have 30 diseases with one symptom each, rather than one disease with 30 symptoms? It's when you have a whole bunch of these symptoms that they should say 'hang on a minute...' But, they don't. Mainly because they don't know anything about symptoms. They don't 'do' symptoms in med school.
But, one of the symptoms most definitely is developing a croaky voice. I can't sing anymore, either. I never had a brilliant voice, but it went down quite well on-stage. Not anymore! It's just one long croak that keeps disappearing in the middle! And, my voice has got much deeper. People think I'm a man on the phone.
Ah! So it was you posted about that TSH of 2.5! See what my memory has got like? lol Are you going to show her that? Being hypo does affect your nails. Mine are terrible, these days. And vitiligo is an autoimmune disease, so if you have that, it would be worth getting your TPO antibodies tested again. Or, doing a private test and getting the Tg antibodies tested, because if they are high, that will mean Hashi's, too. People with Hashi's, often also have vitiligo.
I don't think the CT scan is a waste of money. If your one of those people that have Hashi's but low antibodies, the CT scan could pick it up. Was there a specific reason for ordering the CT scan?
I would certainly associate tingling in the hands with low B12, along with the numb feet. Perhaps you're just not getting enough B12. Neuropathy can be caused by low T3, but far more likely to be the B12.
I don't think NICE does mention a TSH of 2.5, no. I can't remember exactly what number it does give. But, it's not so much that doctors go by the NICE guidelines, but rather by the interpretation they put on the NICE guidelines! And that will reflect both their level of knowledge of thyroid and their prejudices. But, you need to get all the results in before trying to decide where to go next.
Oh, sorry about your singing, I do hope to get back to it. Assuming you are being treated, does your voice not come back? Re the article about 2.5, no, I didn't post it originally, I think I deleted the daily digest where I got it from but I emailed myself the link:-
How will the CT scan pick up Hashi's? He ordered the scan because he asked about memory (being a geriatrician!) so I said worse than it was. He said 'short term?' I said, 'yes'.
Thanks, I will, as you say, get all the results in first. I think I went undiagnosed for years with B12D as the tingling in feet started back in 1995 when I was admitted to hospital and I didn't get diagnosed until 9 years ago. (The tingling which went on to feel like I had plasters on the bottom of my feet - kept telling various doctors over the years - they just look at you blankly.)
Oh lord! I know all about that blank look! I've seen it so many times.
Sorry, I was wrong about the scan, I was getting confused with an ultrasound. That would show if you have Hashi's! I don't think I would have told a geriatrician I was losing my memory! I'd be too afraid to getting a 'diagnosis' of Alzheimer's. Seems to me a lot of old people get diagnosed with that when what they actually have is hypothyroidism.
I don't think I'll get my voice back, now. It just gets worse and worse.
I didn't know he was a geriatrician until i got his copy letter he sent to the gp after my appointment. I thought he was just a consultant in general medicine which is what it said on my appointment letter. It felt like to me he had to be seen to be doing 'something' .
Oh, yes, of course. I forgot that bit. Well, isn't that true of all of them. They do things just to be seen to be doing something, without any real idea of what they're doing!
Hi again greygoose. An update on my results. I have now had the morning fasting cortisol test back and it was :-
288 nmol/L (range 138-620 nmol/L) so of course, came back, normal no action. I don't know at all about that result, good or bad?
I have made a 2nd appointment with the doctor again next week so I need to get my info ready. As you have already seen, my TSH has been going up and down since 2003 - don't know about before that as we lived in Sussex - is there a way to get previous NHS records I wonder. I tried to get some from a Sussex hospital I was in and they said the Mid Sussex Trust is now defunct and all records destroyed, wonder if true. I have just read something in Thyroid 101 from Holtorf Medical Group - They talk about the prescribed normal range in the medical community is a TSH between 0.5 and 4.5 and this suggests that if a patient's levels shifted from 4.0 to a 1.0 they would still be considered normal even though their thyroid function shifted significantly.
This is me with these big shifts - went up to 5 in 2012 and back down to 1.9 in May 2017 as above in other post. None of my tests were fasting because they didn't tell me to.
The other thing I might mention is my creatinine and creatine kinase levels:
Nov 2018
Serum creatinine 58umol/L (range 60.0-120.0) - below their range (it was 56 in 2014) ;and
Serum creatine kinase 187 iu/L (range 25.0 -200.0) - and I thought this was a bit high from what I had read on the internet
My HDL cholesterol is higher - 2.4mmol (range 0.0-2.2) which is the 'good' one I think -
LDL 2.8
Total cholesterol: HDL ratio 2.4 which I think is the total one they look at.
Your cortisol is not good. It should be top of the range early morning. So, time to give your adrenals some TLC - lots and lots of vit C - adrenals need lots of B vits, do you take a B complex with your B12 shots? The B complex should be taken every day. And, adrenals need salt. Plenty of salt - most people don't get enough, these days. And lots of good protein - a high protein breakfast as soon as you rise. Magnesium, too. Don't bother to test, just take about 350 mg. There are lots of different types of magnesium, you need to pick the one that does what you need it to do - laxative? For the heart? For energy? There's a type of magnesium for most needs.
You could also try an adrenal glandular, like Adrenavive. But, I can't advise you on that, I've never taken one.
There's no such thing as good and bad cholesterol. That's just a Big Pharma invention to scare people into taking statins. When they do a 'cholesterol test' they don't even test the actual cholesterol, they test the protein carriers. There are several, but none of them are good or bad. Cholesterol is usually high in hypothyroidism, because the low T3 means that the body cannot process cholesterol properly, and it builds up in the blood. It goes down as your T3 rises. If you want to know more about that, read Dr Malcom Kendrick's blog and his book 'The Big Cholesterol Con'.
So, you really do need full thyroid testing: TSH, FT4, FT3 TPO antibodies and Tg antibodies. And, if your doctors won't do them all, it would be an investment in your future health to get them done privately. To have TSH levels bouncing around like that sounds very much like Hashi's. But, do you always have your blood drawn at the same time, every time? If not, you cannot compare the results.
I'm afraid I know nothing about creatinine. It's something to do with the kidneys, but I know no more than that.
I eat an orange every day. I don't take a B complex as I group I was in said don't take a complex but take things separately, but I may well switch to a complex. I started on these below in October 17 and didn't always take them every day. I don't take the Benfotiamine now as I think I read something bad about it and the other one I take occasionally.
Swanson Ultra Benfotiamine 300mg
Swanson Ultra R-5-P (Riboflavin-5-Phosphate) Coenzymated Vitamin B-2 (written on the bottle) and on the back Riboflavin 50mg)
I never took folate till April 18 and now have cut back on that a bit too as blood test was higher. Funny thing I had out of range folate at one time even when I wasn't taking any.
Re salt, I thought there is a lot of added salt in things, plus I put quite a dollop when I cook vegetables, much to my friend's horror. I don't always have a high protein breakfast, just depends. I haven't been hungry for two years or more and eating can be a bit of an effort. I usually have either porridge - raw or cooked or other cereal like Oatabix. I do eat nuts or maybe a slice of cheese, occasionally an egg as I try and take my Vitamin D, K2 in the morning and they are fat soluble vitamins but find it heard to eat enough to take them; magnesium in the evening or spread through the day as I find magnesium keeps me awake - I know it is supposed to make us sleep! I use glycinate.
My son is an osteopath and doesn't believe in statins either but my husband is on them because he had a TIA. I have read cholesterol is high in hypothyroidism but high in the overall total or HDL or LDL, or doesn't it matter? That is what I have been wondering.
I've had all of those tests except TgAB. I have no idea of what time of day I had the bloods done, apart from last year's where I could look at the old calendar as I didn't know it was important and no-one at the practice tells you this! Thank you.
There's not nearly enough vit c in one orange. I'm talking about several thousand mg. I take at least 2000 a day, but was taking 5000 at one point.
I don't take a B complex as I group I was in said don't take a complex but take things separately,
Are you sure they were talking about a B complex and not a multi-vit? Bunches of nutrients all shoved together in one pill are usually a bad idea. The exception to that rule is a B complex. As long as it only contains Bs. Taking all the Bs separately would be a bit arduous!
I have read cholesterol is high in hypothyroidism but high in the overall total or HDL or LDL, or doesn't it matter? That is what I have been wondering.
As I said, these so-called cholesterol tests don't even measure the actual cholesterol, they just measure the protein carriers - not the same thing! So, HDL, LDL, it's all... arbitary. Meaningless. They shouldn't even be wasting so much time and money measuring 'cholesterol' because it's harmless. It doesn't cause heart attacks or strokes. It is a necessary nutrient - without it your body would fall apart! So, just forget cholesterol all together, that's best.
I have no idea of what time of day I had the bloods done, apart from last year's where I could look at the old calendar as I didn't know it was important and no-one at the practice tells you this! Thank you.
I very much doubt anyone at the practice knows this! Doctors are firmly convinced that it doesn't matter what time you have the test. But, TSH is highest early morning and drops throughout the day - and after eating. And, as doctors only tend to look at the TSH, you need it as high as you can get it. And, if you want to compare results to see progress - or lack of it - tests should always be done at the same time, under the same conditions.
Also, when people are on thyroid hormone replacement (levo, etc.) doctors think it doesn't matter if you take your dose before the blood draw. Well, it does. Because all you're measuring in the test is the dose you just took! And not the normal circulating level of hormone, which is what is important to know. As a general rule, doctors know nothing about thyroid or how to treat hypo, and that is a sad fact of life.
Thanks, sorry been away for a mini-break so didn't reply. I eat potatoes every day and they have vit C, I may well start with a supplement, not sure. Well, it was def B vits the group said take separately but I am now going to get a complex as I think that would be better. I was only taking 2 of the Bs, so would obvs need more. Well, re cholesterol, I did read a high reading can be indicative of one of the symptoms of hypothyroidism - just thought it might be another thing to arm myself with to tell the doctor. I have an appointment today with gp but dreading it really.
Just block all discussion of cholesterol as irrelevant! You do not want to take statins. The cholesterol won't kill you - the statin might! Nearly killed my friend.
Yes, oranges and potatoes are all very well, but you still won't get high dose vit C out of them. 100 gm of potato contains about 19 gm vit C. Just how much potato are you prepared to eat? 100 gm orange has about 53 mg. Still a long way of 1000 mg. I believe we need a lot more vit C than people realise.
All I can say is, that if that group were talking about B complex, they are the ones that have misunderstood. It would be highly impractical to take all the b vits separately, and there's nothing wrong with a B complex as long as it only contains B vits. Lots of people on here take a B complex and do well on them. But, you do need a good one, one that contains methylcobalamin (B12) rather than cyanocobalamin. And, methylfolate rather than folic acid.
No, I don't want to take statins, my husband takes them though. I just want to know if high cholesterol is a symptom of thyroid, the way it is measured. I really am not sure of the point of having B12 in there if I can't absorb it as I am on B12 injections, although I think I have read a little can get absorbed. I do take methylfolate separately. I am just wondering where to look for a good B complex. I am a member of another Facebook group, I know they have files. Please remind me - is this healthunlocked forum a part of B12d.org and if so do they have files with recommendations, I can't see any when I looked.
I have just seen the doctor again this afternoon and no joy at all! Well, I didn't think there would be. I showed her my print-out of my ranges for the past 17 years and she said they are all in range. I said I don't think so as there is new thinking that the range ends at 2.5 - can't remember exactly what I said, but something like that. She said no, very emphatic.
I did say why do the NICE guidelines say that once on thyroid replacement therapy the level the target TSH level for patients is often stated as being less than 2mlU/l or even less than 1.5mlU/l but you don't get treated until your levels exceed 5.0! She didn't answer.
I am awaiting a CT scan and the doctor said let's wait for that first, I can't prescribe anything. I rang the hospital, it will be 4-6 weeks, but I think this is just to check for dementia as that is what was written on the piece of paper, doc seems to think they will check the pituitary, I'm not sure, I could ask when I have it done I suppose. I tried to say I have many symptoms and had a short list which she didn't really read. I said I am fed up feeling half alive for years and having 'collapsing days' out of the blue which I told her about. I am a very type A person so do rush about doing things and I always thought that is why I have collapsing days but sometimes they come when I am not doing much. People are always saying to me 'you do too much'. That is my nature to like to do a lot of things.
I just want to know if high cholesterol is a symptom of thyroid, the way it is measured.
It's highly unlikely that your GP would know that, anyway. They don't learn about symptoms in med school. And, the only thing she will know about statins/cholesterol is what she learns from the Big Pharma rep who wants to sell the statins. But, I don't think it has anything to do with the way it's tested.
I really am not sure of the point of having B12 in there if I can't absorb it as I am on B12 injections
Who said you can't absorb it? Anyway, you can't get a B complex without B12, but you do need all the other B vits, not just B12 and folate. You'll find a good B complex on Amazon - Ingennus Super B-Complex. A lot of the people on here take that one.
Please remind me - is this healthunlocked forum a part of B12d.org and if so do they have files with recommendations
I don't think Thyroid UK is a part of anything. And they don't have files with recommendations that I know of. Recommendations are normally made on individual posts when people ask for them.
I said I don't think so as there is new thinking that the range ends at 2.5
That is what has been recommended, but I don't think it has been adopted yet, so I doubt she would know about it. She just goes by the ranges that the lab uses. Plus doctors have been 'advised' not to diagnose until the TSH reaches 10, in most cases! She wouldn't dare go against that because if you actually got better, awkward questions might be asked. Very few doctors ever dare to go out on a limb. I very much doubt she has any understanding of thyroid problem, and probably cares even less.
Thank you. Well, re B12, surely the whole point is that people who are on injections can't absorb it very well from tablets, unless they are high dose and then I think some gets absorbed. Surely that's the whole point of pernicious anaemia, we can't absorb. I've read a lot and that is what I have taken on board. I've been severe in Vit D and zinc.
Thanks I will look at the Amazon one.
Ah, not adopted in the UK so if she hasn't done any reading she wouldn't know.
She did say she is happy to send me to an endo for a 2nd opinion once the ct scan is out of the way. I have just been googling and found one who is recommended at a hospital quite near me, so that could be an option. If he doesn't do private I could request him. She did mention 2 names but I can't remember as I was feeling a bit annoyed inside.
As I understand it, having Pernicious Anemia means you can't hold on to B12, you can't store it, not that you can't absorb it. But, in any case, I don't think you can get a B complex without B12. And, if you can't absorb it, it doesn't matter anyway. It will just be excreted.
Could be worth seeing an endo - better than doing nothing, anyway.
"the doctor turned out to be a Consultant Physician and Geriatrician! Of course, he focussed on my saying my memory is not so good, and consequently I am scheduled for a CT scan. On the piece of paper I took out to reception at the hospital it said 'MRI Dementia ?'"
WHAAAAAATTTTTT!!!!!!!
That makes me so angry. Before finally being officially diagnosed with "Subclinical" Hashimoto's (my highest TSH tested just under 6) I could sometimes hardly concentrate enough to string a sentence together. Part of most days would sit for hours wishing I was tired enough to go to bed. Just sitting there unable to do anything to pass the time - read, watch a film or even think properly - was so boring.
I managed to ring the surgery and a very abrupt doctor phoned back. When I struggled to tell him I had difficulty functioning and remembering words he told me I was "Confused", and wouldn't listen to anything else I said! But at least he got me a thyroid test (no T3) and chest x-ray, which eventually got me started on thyroxine.
The sad and ironic thing is that very severe hypothyroidism can cause a form of dementia, as brain cells slowly starve.
mountainice, I am 70 too, by the way, and worked with dementia patients for years. If it's any comfort I am certain that no way do you have dementia!
Thank you. I am glad you got the result you wanted. No-one wants to go onto medication if they can help it but if I need help with thyroid then yes, I do want help. I have struggled for a long time with bringing certain words to mind when explaining something to friends. Of course, we all tend to say - oh, we are getting older, my husband has trouble sometimes remembering certain words and then suddenly the word will pop into his head later. I feel I have got worse though, along with my other symptoms, the most worrying to me is my muscle function and how it has quite dramatically declined. I am learning piano, which I think is very good for brain function and I have singing lessons and go to choir, though at the moment I am having a break from singing lessons as it feels like I have hit a brick wall. Same applies to choir, am wondering whether to stop for a while as things seem too much effort at the moment. I am trying to keep on with piano as that skill drops off quite quickly without practice. I have always been the sort of person to just keep on ploughing on but it feels like I can't do that much longer.
I don't have much in the way of muscle or joint ache, but singing is almost impossible, I've gradually got more and more hoarse over several years (looking back it must have been thyroid) and can't even produce a squeak most of the time - higher notes impossible.
I don't play the piano (unless you count slowly picking out something by ear, with lots of mistakes!) but my typing has deteriorated drastically for several years, fine coordination seems to be affected - quite likely thyroid as well
Interesting my typing is so inaccurate it drives me mad! Also I always had a tremendous smash at badminton & I mean a real killer smash but since starting playing again after being diagnosed with hypothyroidism I simply cannot time the shots correctly and there is no power whatsoever in any attempted smash - drop shots are my only possible response 😞 never my forte. I kept at it for some time but very little improvement occurred. I guess these moves are complex and if just one thing is out (possibly just timing in my case) the shot will not work as intended. I got a lot of loss of strength in my torso and a real woolley head plus the most hideous toe and finger nails ever, they used to be so beautiful. I had lots of other symptoms many the same as mountainice oh yeah I forgot mouth ulcers ++ ....but was left untreated for decades. I am much better now but things like typing, toenails and smashing at badders still leave room for improvement! My toenails have improved a little recently - still no oil painting!
Talking of oil painting, I used to go to an amateur art group (not oils, too messy), but a few years ago found I was unable to paint properly any more. Eventually I gave it up, though still long to be able to do some. Again I suspect it's to do with being hypothyroid
That is a real shame. I was an illustrator for many years and I can still draw/paint reasonably competently but I had to give up my career in illustration. I found it very hard going once I got hypothyroidism I bumbled on for a bit, quality was there but I became very slow as each task change was no longer automatic plus my eyesight was badly affected. I find the preparation to paint is now overwhelming but I do sketching of my dogs and go to a life drawing class every week it keeps it simple and doable. What aspect of the painting is causing you problems? My technical control is fine it is just all the stages between the idea and the result that are my barrier I simply cannot face all the faffing around any more. Perhaps my technical background has made me adopt a very convoluted methodology. The eyesight is my second big barrier. Odd isn’t it to loose a skill that was once like breathing.
It was just a hobby but I enjoyed the company in a very relaxed and friendly art group meeting every week. I was trying to complete a painting as a gift for a friend and nothing seemed to go right. I got discouraged and gave up (like the art equivalent of writer's block) but looking back it might well have been an early sign of hypothyroidism. Now I don't seem to have the motivation or spare energy to bother, just think about doing it. As you said, everything takes longer, and there are other more urgent things I need to do.
It's tragic when you have to give up work because of something like that. I did too, (age 67, but would have loved to go on). I no longer felt safe driving to unfamiliar places or through the city - especially in rush hour. My concentration was poor, low energy meant I could no longer give of my best. Also, the work involved caring for vulnerable people, giving them medication, sometimes taking them for outings etc, it would have been wrong to try and continue for everyone's sake.
I expect many, many people on here have their own tales of woe. Yet unresolved thyroid problems are not really considered a disability
Yes, I can understand the feeling of too much bother, that is why I have suspended singing lessons for now, and yet I still have some energy to be indoors and cook cakes, but I do my things in a quiet way and feel much better without too many people around me - apart from husband of course, but he is often at allotment or in his study. I am only child so wonder if this is just an extension of being on my own a lot anyway as a child. Who knows? I have throbbing muscles every day and night, I think I will have to focus on that with the doctor.
Sorry to hear that about the art work. Could you simplify and just use ink and a brush or I use a fine liner with a water brush it is very quick and gives great results and you only need paper and the other two so very easy in terms of setting up. I like watercolour toucpukd try a mini travel box ofpans and just dabble the paint on - simple!
Actually some symptoms do count as a disability some under the mental health act but it ought to be automatic not something you must fight. for. Oddly nasal hallucinatuonscount as a mental health disorder. I had lots of those!
Seen it. TSH is too high for someone with Hashimoto's, (have you been diagnosed with this, often called "Autoimmune hypothyroidism") but it's the reference range which is too high! The TSH reference range is based on the range for "Normal " people. For people like us it needs ideally to be 1 or under. And even then... I felt no better after the last raise when my TSH was 0.01, though improved from when I started treatment.
Having read the above there isn't much I can offer except the following extract I have :-
Are there any medical conditions that can cause Burning Mouth Syndrome ?
Yes -
Dry mouth
Acid Reflux
Thrush
Nutritional deficiencies - ( eg. your body may not make or store enough iron, vitamin B12 or folic acid )
Diabetes
Thyroid problems
In some cases BMS may have more than one cause.
Causes of BMS :-
Hormone changes
Stress, anxiety or depression
Problems with your immune system
Damage to nerves controlling taste or pain
Toothpaste and or mouth washes
Badly fitting dentures or being allergic to the materials used to make the dentures.
I know it's a fairly wide spectrum but you can probably discount some of the above.
I've listed as written but within here are thyroid, immune, hormone and nutritional areas :
I know something of these symptoms, but please don't ask me the publication I'm quoting from, because I can't see any references as to where my paper was copied from.
In my experience dealing with a dry, sore burning mouth every day, all day, it is inevitable that the person will feel down and this may lead to depression whilst living with BMS.
Hope this helps a bit, to focus on what might need to be looked at in more detail.
Thanks. I've had it so many years it starts to become part of you, like many symptoms do. In the past year or so I have to drink loads of water - I know that's good for me! but I constantly have a dry mouth and lips and the lips feel very parched. Often get a sensation of my lips suddenly swelling from inside, had that 2 or 3 years, docs just look at me blankly.
I am 71 years old. I had been so tired for years. Thyroid Disease runs in my family. All your symptoms were like yours. They ran tests and send me to a Specialist. He ran blood tests and I was hypo and they put me on Synthroid 25 and found two good sized nodules during an ultrasound. I need needle biopsies. I was sent to a surgeon and the removed one nodules and turned out I had Follicular thyroid cancer. I have my thyroid removed and radioactive iodine treatment. I now have damaged salivary glands that may improve. Please get your thyroid checked by a Endocrinologist.
Thank you. I thought I was seeing an endocrinologist but turned out to be a geriatrician so I am going to ask the gp on Friday why I was sent to that particular consultant and not what I was expecting! I am glad things were found at least for you, better than not knowing I think. Does it mean you have a dry mouth then if you have damaged salivary glands?
I have no knowledge of what was in my family, mum or dad. They had health problems but don't think things like B12 or thyroid were ever checked.
Hey there, I booked an appointment for massage. My therapist asked of my history - Graves Disease, post RAI 2005 and now with no saliva and a burning painful mouth.
We decided on head, neck, and full massage along with Reflexology. I had no experience of either therapy, was so unwell, and just thought give it a go.
Well, I was so impressed even from the first session. It might just give you some relief.
Massage of the head and neck was so beneficial for me - just a share - xx
I was just on severe for Vit D deficiency 4 years ago - that made me feel really tired with aching muscles. Nurse said no symptoms with Vit D deficiency!!!
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