hi everyone I thought I would give you a update on my last post. Thank you to all that posted it really helped.
I have now had an ultrasound on my neck lumps. I was told I had a very small thyroid and this happens when you have been on Levo for so long (30 years) I’ve never heard of this, has anyone else? He found something on my parathyroid gland and I now have to have a nuclear CT scan of my thyroid.
However my Endo won’t see me for 3 months. So I am seeing a good (hopefully) Endo specialist privately on Friday. I am not sure what to ask him. I’ve sent him my notes and I think he will need antibody bloods as they have never been done. Any ideas on what I should ask? I have a limited time to ask questions.
I reduced my thyroxine before Christmas on doctors and Endos insistence from 175mcg per day to 150mcg per day. They say I am taking too much levo and that’s why I am losing so much weight. It was the worst time because most of us overeat a Christmas and I was no exception. Despite this in three weeks of over eating and reducing my meds, I have lost another 3lb! Does anyone know how long it takes for a reduction in levothyroxine to affect your metabolism?
I’ve also found that my levo was changed in August from TEVO which I’ve always been on without problem to Mercury Pharma could that affect my T4 results?
I have a lot of autoimmune conditions and have just acquired another. I know my B12 is not being absorbed but could this affect my thyroid too? I am desperate to find some answers as my weight is spiralling down and I am the lowest of normal for my height and I can’t afford to lose anymore.
I’ve also had cancer in the past and no one will do any tests until the thyroid is sorted so you can understand why I am anxious to get the thyroid problem sorted.
Thanks guys x
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I can't say if this is always the case, but my thyroid has shrunk somewhat since I've been taking thyroid hormone. Most things shrink with lack of use.
Weight-loss can be a hypo symptom - not everybody puts weight on. Or, you could have Ord's Thyroiditis. Ord's is just Hashi's without the goitre, where the thyroid shrinks to the size of a small pea. I don't know how common it is, but doubt many doctors have ever heard of it. But, of course, most doctors prefer to blame the patient, anyway.
Thanks Greygoose I’ve never heard of Ords but it seems after 30 years of being hypothyroid I know basically nothing about it. Back then there were no other tests you were either hypo or hyper 🤣 and you are definitely right about blaming the patient!!!
Well, they only need to test the antibodies. If only that were done automatically when diagnosing, a lot of time would be saved. But, they think they're saving money by not doing the right tests, when actually they're spending more money than they would if they did the job properly right from the beginning. I don't know who controls ecconomics in the NHS, but they've got it all totally wrong!
Ord's has sort of gone out of fashion. Nobody uses that name anymore - or they didn't seem to for quite a while, but now it's coming back. It was either called Autoimmune Thyroiditis, or just Hashi's. When I was diagnosed 20+ years ago, I was just told I was hypo. And the test results meant nothing to me. It was about ten years later that a doctor looked at my earlier test results and said 'oh! you've got antibodies!' And he explained what that meant, but he called it Hashi's, not Ord's, although I obviously didn't have a goitre. I only learnt about Ord's much later, on here.
Couldn’t agree more that the NHS has got it all wrong. No one seems to look at the whole picture just sent from one so called specialist to another.
I think I probably have autoimmune thyroiditis. I have so many other autoimmune disorders it makes sense that my thyroid would be the same.
Because of the doctors strikes my Endo appointment has been put back and back. As they are striking in February as well it will put it back again. That’s why I’m going private but I am annoyed that I am being forced to. What happened to the hypocratic Oath that doctors used to swear when they qualified? Part of that is “I will do no harm”. Striking makes a mockery of that one!
Sorry to rant but it gets me so mad that thousands of people are dying because of their actions. Striking should be banned.
Yes, this site is great for information and everyone is so nice
Never mind the striking, they should do their jobs properly when they are working, which with thyroid, they refuse to do. They refuse to give you enough hormone to make you well, and refuse to do the right tests. They might just as well be on strike for all the good they do!
I don't think they swear the hypocratic oath anymore, do they?
To your last point obviously not as they are forever striking for ridiculous sums which they know the country can’t afford! Get rid of the management and paperwork for targets they never reach. Go back to the old Ward matrons, which allowed Nurses to do the job. and not fill in paperwork. Get rid of the fat cats at the top on ridiculous amounts of money and we can afford to pay the Doctors a proper wage.
That is why I’ve opted , reluctantly,to go private so that I can get the proper tests and treatment that I need (hopefully). But I begrudge paying for an NHS that won’t see me and paying again to see someone privately.
That is why I’ve opted , reluctantly,to go private so that I can get the proper tests and treatment that I need (hopefully).
We ALWAYS recommend you get FULL thyroid and vitamin testing done BEFORE booking any private consultation
A) otherwise first appointment is waste of time and money
B) essential to test thyroid levels early morning, ideally before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
C) Medichecks or Blue Horizon testing likely cheaper than via private endocrinologist
I had some tests done on 15th December by my GP. It was a few days after that I reduced my levo from 175mcg per day to 150mcg per day so too early to test again but I have not had antibody tests ever
Last results were
TSH. <0.01 always have been
T4. 32,7 up from 22.7 in Nov
T3 4..5. up from 3.6 in Nov
previous results were in range but that was in August when I was taking TEVO after that test I was changed without knowing to Mercury Pharma
B12 1476 Previously 771 (Injections)
Vit D not tested but on capsules
Folate 3.8 Previously 2.8
Corrected calcium 2.69 was 2.48
Creatinine 98
RBC 5.26
CKD 49.9
Iron 12.4
Cholesterol 6.12
CRP 6
Patietal cell autoantibodies - positive
Intrinsic factor to follow
Ferritin 44.1
PTH. 8.73 in April
Weight 11st 10lb Dec 22
Weight 7st 7lb now (unintentional)
If you can make sense of these you are way ahead of my GP who only looks at T4 ever
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
how much vitamin D are you taking
Test twice yearly via NHS private testing service when supplementing
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
My nurse/practitioner told me to take folic acid for low folate. I thought it was strange but assumed (wrongly) that she knew what she was talking about.
No doctor has ever told me about not taking other tablets with Levothyroxine. However you have mentioned that before so I took note of it.
I didn’t always know when nurse wanted thyroid tests along with my other bloods so although the last time I made sure it was a 9am fasting. In future I am going to have thyroid bloods done at the hospital and cut out the GP as she doesn’t have a clue about thyroid at all. In fact I think I will call you Dr SlowDragom in future as you have given me way more help and information than any Doctor. Bless you 😁
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
With previous GP had monthly bloods which showed quick decline in iron levels. I could take the tablets so had an iron infusion most years. The month after it would drop significantly then slowly go down When it got to 17 I went back to hospital for another iron infusion. This went on for years. My present GP tests for ferritin but the pattern is not the same. It has gone from 22.6 in April to 38.3 in August and44.1 in November which doesn’t make sense to me.
I have been getting hair loss again but I thought that was due to thyroid.
** I note your comment about ferritin ranges being the same for over 60s. So the range that is shown on my blood test is 15 to 150. As I’m female and 72 does that mean my range should be 30 to 650? It shows my age on the top of the blood test results, so I don’t know why they are using the wrong range.
We are waiting for a result of Intrinsic Factor as Parietal cell autoantibody test came back positive so possible Pernicious Anaemia.
Thanks for all the information and for your time today I really appreciate it and am now starting to get to grips with the complexities that I didn’t know existed. 🤔😁
Losing weight can be due to - change in thyroid meds, your parathyroid gland working overtime and causing high calcium in body. Your body is very low in fT3 which means you have a conversion issue with your levothyroxine. Ask endocrinologist about trialing liothyronine (T3 tablet) if you reduce your levothyroxine. Hope your test and scans go well. Hope they sort you out soon . Xx
Aww thanks Shelkyblur thats very kind of you. I agree I think I have a conversion issue. I have never been offered T3 but I will put it on the list of questions for the Endo, thanks
I have been losing weight for a year now and that has been an impossible task in the past due to hypothyroidism. I have not tried to lose weight and I have had my thyroid meds reduced 3 times since August because of the weight loss. I personally think it’s not all down to thyroid but I can’t get a full body CT until my thyroid problems are sorted. Having had cancer in the past this is a concern that all they will look at is my thyroid
They had better sort it out soon as I have never been this weight since my teens, many moons ago!
Irishacres, when we have the likes of Paula Vennells (the Post Office scandal) taking top CEO jobs in the NHS, we should know we are in trouble. The NHS and other government ‘owned businesses’ are more and more often being run by incompetents from the so-called business world. I fear these posts are seen as easy money for failed business people. Many clearly are not the calibre required.
We all agree I think, the NHS must be run by effective, knowledgable individuals, preferably with experience as medics themselves (honestly I think this bit is a necessity, although finding such an animal!?!) but be prepared to take on the massive job of running the NHS with dignity, support of staff and satisfaction of the patients.
Similar to other ‘government businesses’ much of the NHS has been taken over by third rate (or worse) ex business leaders. There is no reason these people should be any better than properly invested in and trained homegrown managers. There remain managers in the NHS from when the NHS was a complete ‘bubble’. We know that does not work either. There is opportunity to put this right but who has the ability and the ‘balls’ to do it?
Good God I had no idea that Paula Vennells was now working for the NHS!! We are definitely doomed then if that’s the calibre of top management.
Looks like the NHS wants us all to go private. My GP has already sent me to private specialists on the NHS. Both of the Consultants I saw were rude, arrogant and looked down their noses at this old NHS woman. One even assaulted me. But with no nurse in the room it would have been my word against his. There was no point in complaining as I had raised a complaint against an NHS doctor previously and after 18 months of stress and anxiety all I got was some random admin person saying sorry I “felt “ I had not been treated properly 😡
I am not able to express my utter disgust at your treatment. I want to say we need to fight back but none of us appear to be fit to do it. No doubt we will return to this.
That manipulative “random admin person saying SORRY I felt I had not been treated properly” incenses me. It seems that is from their training regime.
Just a note to say Paula Vennells has already moved on. She lasted two years. This is exactly what these people want and we don’t. They skip out before accountability can step in. Hopefully she has now been caught. Just stripping her of her dodgy CBE is not nearly enough.
Thank you for being angry on my behalf I appreciate you caring. I had a procedure where I should have been sedated. The quack (doctor) asked huffily why I wanted sedation. I said I had had the procedure with sedation before and wanted it again and if she wouldn’t do it I was leaving. She gave in (I thought) went through to theatre and she pretended to give me drugs. I kept telling her it wasn’t working as I was still awake ! The time before I remembered nothing until I woke up in recovery). She ignored me and started the procedure, I was in agony and kept telling her to stop but she didn’t. I called a nurse to tell her to stop. She didn’t. I went into shock until mercifully she couldn’t complete the procedure and stopped. She didn’t say a word to me. None of the guidelines were followed by any of the staff in theatre or recovery. Long story short they got away with it because you can’t fight the NHS and I had to have therapy and was diagnosed with PTSD from the trauma they inflicted on me. I was supposed to have 5mg Midazolam and 5mg Fentanyl.
Some years later I had an angiogram for my heart they gave me 2mg Midazolam and I never felt anything just happily looking at the screens showing the wire put through from my wrist to heart.
POINT PROVEN BEYOND DOUBT she did not give me sedation, but too late to do anything.
They have us tied up tight as they write the rules. It’s extraordinarily difficult to sue. Amongst other incidents, I had a second endoscopy, the first no problem. A few years later, after the second, I looked as if I was a murder victim but everyone pretended I looked ok. I went into a toilet on the way out. Fully bloodshot eyes. Bloodspots all over face which got worse for days after. Like something out of a horror movie. When I later showed the photographs to the consultant, nobody was ‘moved’. It was treated like an oddity. Unusual. Actually I was choking during the procedure but unable to communicate it. I now understand that my throat was swollen probably due to my undiagnosed hypothyroidism, which remained undiagnosed for another twenty years or so.
As I say ‘amongst other incidents’. I always thought there was something lacking in me.
OMG and I thought it was just me I always warn them I’m difficult but maybe it’s them. I thought they treated me like that because I’m old and complicated
I’m so sorry you too have had such bad experiences. It sounds horrendous! How on earth did you go undiagnosed for so long?
I had one neurologist who hardly spoke to me and as very rude, write to my GP to say my tremor (which had already been diagnosed as functional) was down to physical symptoms from adolescent abuse. Totally untrue, never discussed with me, made up codswallop!!
Can you please stop with the party political broadcast, it helps no one. We all know the NHS is on it's knees , I worked in it for 28 years, most of those years either didn't get a wage rise or got such a small one it was in real terms "favourite Tory quote" a pay cut. As for not being able to pay proper living wages to the people getting the S**t from both sides, if the tax avoiders, evaders and governments cronies paid back the embezzled monies I wouldn't need to be having this rant,
Erm ….excuse me we were having a discussion, not a political debate.
I understand it’s not the fault of the people that do all the hard work, long shifts and are abused on a daily basis. That is not right and should not be accepted. We were not discussing that.
As a tax payer for 46 years of full time work with no pension other than the measly state pension, I think I have earned the right to medical treatment in my latter years. I take exception to be lumped in with the few “rich” tax evaders.
We all know the NHS is underfunded and most of the money goes to fat cats at the top of the ladder. However that does not help people in pain or dying who can’t get to see even their GP.
I believe you made this into a party political broadcast. We are here to get help from fellow sufferers so why did you feel the need for the rant if you were not here for the same reason?
Thank you for your 28 years of service in the NHS the genuine prople on here appreciate genuine caring NHS staff I’m sure.
Totally agree, too many Dr’s are not doing their jobs properly and it’s not acceptable. It’s also dangerous. I have recently had a low cortisol blood test showing as abnormal from the lab and both my gp and nhs Endo ignored it. That’s just one example of many. Shoddy is an understatement! Too many, not all, just don’t care anymore.
I find medics odd in what they flag up as abnormal needing treatment and or further tests, and results that come back as abnormal and they just ignore them. I had an abnormal raised PTH result a couple of years ago.
Nothing was done, no further testing. It wasnt until I spoke with a locum from outside the practice several months later, that she insisted it needing re checking, along with calcium and vitamin D. Fortunately my PTH had dropped back into normal range by then.
Doctors do lots of clutching their pearls when TSH is only sllghtly out 😠 however.
Have to say ignoring abnormal results hasn’t been just bloods but significant other testing by both GP’s and Consultants. Doesn’t enable much confidence. Interestingly it’s only occurred within nhs, not private.
When it comes to nhs blood test its the labs that control giving results or not. Generally ACHT, vit D and ongoing repeat blood requests are often ignored by phlebotomy and more..no results given via GP’s (GP’s must get so frustrated!).
Absolutely correct! I’m fed up of my Dr ignoring important test results and jumping on a slightly raised T4. I always ask for my blood results to be emailed to me so I can check them. But I must admit I missed the high PTH but so did the Dr. I had a chest xray before Christmas and spoke to my GP last week. When asked about it she said “oh , I’m sure it was fine but when she checked there was an “oh dear” followed by silence. That really spooked me. But she hadn’t heard of what they had put on the report!
I went for an ultrasound last week and I asked the radiographer if he could look at the XRay as my GP didn’t know. He was appalled that she didn’t understand it and told me to find a new GP says it all really 🙄
Whatever their reason it’s not acceptable. They get paid enough and if they are despondent or past caring then they are in the wrong job tbh. Even nhs secretaries can’t manage to pick up the phone when it rings. Seems to be an incessant lack of quality working. Have to say it’s a postcode lottery too so hopefully not all trusts. Generally many patients have to now be responsible to check their own results and try and get help for their problems. It’s not right ☹️
I agree it’s not right. I believe the problem is much deeper, there is greater pressure on people who can or who even cannot but are desperate, go private. I’m one of them against all my values.
The NHS should be free at the point of need for everyone. This principle is getting lost as we experience our NHS being mismanaged by successive governments and NHS managers who are totally focussed on data rather than patients needs. It’s a mess and breaks my heart.
Absolutely…not focused on health and they waste millions, not least because of poor management, rediculous protocols which causes costly ‘going around in circles. That said every member of staff is paid to do a good job and consistently get away with not doing so.
99% of nhs Consultants also do private work or is it private Consultants doings nhs
work 🤔🤣. The goods ones under private do not just apply nhs protocols (ie not just bloods but symptoms too) and can give more time, at a cost of course. Private Dr’s that just apply the same as nhs more likely more into money I suspect. A big attraction for nhs working is the Consultants pension, which is huge. My only annoyance with private is when they use their nhs clinic time to do private work like dictation etc..happens all the time.
Most important is finding the best listening and thorough Consultant who wants to help eh.
I’m hoping this private doctor is ok. He doesn’t work for NHS as well. I spoke to his Secretary and she was very nice He also asked for GP referral so he could see whether he was the right person to see. After saying “have you tried to get a GP appointment lately.” She said email all letters and test results through and he would look through it.
The next day she phoned to give me an appointment as he said he was definitely the right person to help me., so I am cautiously hopeful 🤞🤞
I hope that’s not true SmPea, I have had to book a private Endo appointment for Friday. It’s against all my principles but I’m desperate to get answers and can’t wait 3 months to see an NHS Endo who couldn’t give a damn. I’m a pensioner on state pension alone, I am having to dig deep into my paltry savings to see the private Endo but I know I need blood tests and a full body CT scan that can’t be done on NHS as well. I might as well use my savings because if I don’t get answers soon I could die anyway and you can’t take it with you, as they say 😡
Worrying when so many feel they have to go private when it’s really not an affordable option.
If you need blood tests it’s worth asking your Consultant if he would be prepared to write and ask for your GP to do the bloods. Previously I had that situ and gp did them. Private bloods tests are expensive, even basic ones. May depend on which blood tests you need as some gp can’t get done (labs refuse or ignore).
My nhs Trust is now averaging 60 weeks to see a consultant… rediculous and dangerous ☹️. Hopefully other trusts are much better.
Thanks for the tip. GP should be calling me tomorrow🤞 I will ask her. I finally found a Boots Pharmacy that can get TEVA for me, well this month at least. So will have to get meds from 3 different pharmacys!!! GP has already written to all my consultants asking if they could do bloods less often than 3 monthly without telling me. But I think Lsbs take longer for GPs. I’m still waiting for one from 15 December!
If he will do it I will ask for general bloods from GP and only specialised from him
Can’t believe your trust has a 60werk wait to see consultants. That’s not a service at all. It must be so distressing for people having to wait and I guess in agony in some cases. Disgusting
I am lucky because my GP practice comes under one Trudt but the area I live comes under another trust, although some are an hours drive each way. Still much better than having to wait 60 weeks.! 🙄
…..” also found that my levo was changed in August from TEVO which I’ve always been on without problem to Mercury Pharma could that affect my T4 results?”
Thanks SlowDragon It’s good to get that confirmed. I did request that it was changed back to TEVA but the pharmacy that makes up my meds in plastic trays say they do not use, nor will they order, TEVA. I am going to ring around next week to find a local pharmacy that will get TEVA and get it taken out of my trays. It will mean going to three places for my meds but if it helps reduce my T4 and stop the GP panicking it will be worth it. Thank you great advice as usual 😁
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
…..”Does anyone know how long it takes for a reduction in levothyroxine to affect your metabolism?”
Retest full thyroid and vitamin levels 8-10 weeks after dose reduction
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
I don’t see ranges provided (am I missing them?) so hesitate to assume … irishacres so is it accurate to confirm these are FREE Ts and the top ends of the ranges are FT4 around 22 and FT3 around 6 or 7?
My husband had Hashimoto's and was under medicated for about 30 years. He had a scope by an ENT doctor to look at a lump on his jaw (which was a lymphoma). At the time the doctor could not find any remnant of thyroid tissue. He said this was unusual as there is normally a little stub. Never had an US. Daughter also has Hashimoto's (6 years) and her US shows that the thyroid has atrophied and her GP says this is what is to be expected. So in answer to your question, the thyroid definitely shrinks as it is no longer producing thyroid hormones - the body is reliant on the replacement thyroxine.Sue Long
You mentioned that something was found on your parathyroid gland this could be an overactive parathyroid gland, or primary hyperparathyroidism, did they perform.. PTH, CALCIUM, VITAMIN D together (PTH to be done in a EDTA tube usually purple top)
If pth and calcium are over range, then as I said that's primary hyperparathyroidism, you can also have calcium at the top end and pth over range, this is normocalcemia, which still means you can have a parathyroid problem.
Im waiting for the 4D ct scan to locate a rouge parathyroid gland, unfortunately most endocrinologists know very little about either primary or normocalcemia hyperparathyroidism.
I have no thyroid lost it to graves thyrotoxicosis in 2019 and are struggling on thyroid medication, but got my diagnosis of primary hyperparathyroidism last June.
It's surprising what symptoms come with parathyroid problems, weight loss can be one.
Suggest you read up on both primary and normocalcemia hyperparathyroidism, it doesn't hurt to be for warned with these endocrinologists.
I'd be firm and ask "what did you find on one of my parathyroid glands"?
I hope you can get some answers 👍 but remember they know very little about primary or normocalcemia hyperparathyroidism.
Thanks Burki. I was diagnosed with hyperparathyroidism 2 years ago. There was a question as to whether it was primary or central but the brilliant Endo left as all the good ones do and I have not seen the new one for two years. Just a phone call once a year. Basically he’s not interested. I asked for a face to face appointment urgently and was given one in Feb which has now been pushed to March because of the doctors strike 😡 That’s why I’ve opted to go to see a Private Endo on Friday
The radiographer who did the US showed me the screen. How the heck they understand it I will never know! He found something on the parathyroid gland which I now have to go for a nuclear US. He wasn’t sure what it was
I’ve never heard of notmocalcema hyperparathyroidism. Another one to check on. Thanks for the info it’s much appreciated 😁
No problem, but it could be you have another rouge gland, hopefully the 4D ct scan will shead some light on it, I'm hoping my scan does to.Best of luck🍀👍
That's secondary hyperparathyroidism, you get vit D prescribed to bring your calcium up, thus the pth will decrease.However if your calcium is over range or top end, giving large doses of vit D can increase calcium, making you feel worse. 👍
Well that’s something else I didn’t know! So vit D increases calcium? That’s interesting. I didn’t know you could have secondary hyperparathyroidism either. I was told primary or central. You would think after 30 years I would understand everything thyroid but apparently not. Thanks birkie 🤔
1,(Definition of primary hyperparathyroidism) ... When the PTH is over range and the calcium is over range.. Your vitamin D can be deficient, insufficient or normal.
2,(Definition of secondary hyperparathyroidism) raised PTH... With low calcium or under range calcium, vitamin D can be deficient, insufficient or just in range.
3, (definition of normocalcemic hyperparathyroidism).. When the PTH is raised, with a normal calcium level , but top end (not at the bottom) and your vitamin D is insufficient, deficient or in range.
Just to confuse the issue more😄 there is another parathyroid disease 🙄
4, (Normohormonal hyperparathyroidism) this is a normal PTH... With a raised calcium, vitamin D can be normal, deficient, insufficient.
You can bet Yr bottom dollar the above condition will be lost on the old endo, and as for the other 3 well they have very little training in the subjects 🤦♀️.... We're... DOOMED😄
Hi reducing thyroxine...I believe you should notice in about 3 wks or so as when mine is raised this is roughly the time my pharmacy tells me its beginning to work..
Just one question I have for you though and that is does your blood pressure drop much and are you hungry all the time?
No I am not hungry all the time. I tend to eat little and often since I had my gallbladder removed as the bile is not released when I eat so I can’t eat big meals. My blood pressure is normally low. I’ve reduced my levothyroxine from 175 to 150 per day for over 3 weeks because the GP and Endo thought I had gone from hypo to hyper.
However, despite the Christmas binge I have still lost 3lb in 3 weeks. Maybe, as burkie said, it’s my hyperparathyroidism that s the problem not the thyroid.
Isn’t that relevant as well for why she might be losing weight and having signs of over medication? (This is a true question, as opposed to saying this is what is happening).
I had a scan on my Thyroid last year and was told that mine is very tiny and I have only been on Levothyroxine for 7 years!!!
I have Hashimotos or Ord's as said here without a goitre and I "think" the Thyroid shrinks due to autoimmune attack and it being destroyed but I am no doctor.
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Thyroid Med update
Still unwell..now saying low B12 ?
Update to last post: What does T4 do?
Recent visit to endocrinologist at Barnsley Hospital. 
Good new from gp
