Total thiyroid removed /hyper parathyroid illness - Thyroid UK

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Total thiyroid removed /hyper parathyroid illness



Not been a good new year was in bed again and had the worst hyper symptoms the last week seem to be getting worse( History)

Had total TT in May last year.. Been on levo(don't feel as if its made much improvement in my health) as I've said in other posts it flares my colitis up... I've been bedridden on and off now for 8 months... I was feeling totally lost and just want to lock myself away. But unfortunately I really needed my eyes tested I went yesterday for one it took all my energy just to get up!! When I came home I had to go back to bed as my whole body was shaking I was sweating profusely had absolutely no energy thought I was going to faint

I rested then began thinking I'm on 50gm of Eltroxin surely that can't be giving me these hyper symptoms (because that's what they feel like) so I thought back to when I had these same symptoms way before my total TT it was when I was diagnosed with hyperparathiyroidism went in to the symptom list and bang it made sence I've been putting some of those symptoms down to the levo,abdominal pain, total tiredness, bone and joint pain, sweating nausea, cramp, pins and needles ect.. I'm assuming when you have total TT they leave your parathyroid glands in I'm I right in thinking this? I had hyperparathiyroidism in 2004 and was really ill i have several auto immune illnesses to.. When I was diagnosed with hyperparathiyroidism they left me for months then took another blood test which showed normal levels given what I know now I would have questioned that finding but I don't know if my immune system was attacking the parathyroid glands or not or even how it occurred.

Could I be attacking my parathyroid glands? I was also taken in to hospital in Oct last year with kidney stones!! I'm passing a lot of urine and when I dip it with my test strips it shows large amounts of white blood cells.. Could hyperparathiyroidism be the cause?

Thanks in advance karen❤️❤️❤️

25 Replies

Hi Birkie. Eltroxin is listed on as having the side effects you mention. I have seen other advice that Teva may be a better formulation for some. As this has been going on for 8 months, think you should go to a minor injuries unit if you live in the UK, and explain the effects of the drugs. You may need a thorough range of tests as the colitis, you speak of may be part of the autoimmune problem that has not been diagnosed.

The bowel problems and tremors an get worse with Eltroxin, but if you already have had a diagnosis of colitis, this may be making it worse.

I can only speak from the point of view of autoimmune problems with your diet which may affect your body even though your thyroid has been removed. The main food intolerance tests on the NHS are for dairy egg and gluten. However there is an unrecognised bowel condition known as non celiac disease linked bowel condition. This is when something like multigrain sensitivity, so there are many proteins in the wheat, rye, barley, and also other foods such as rice and maize, which are autoimmune factors in the diet. I had a food intolerance test as did my grandson and the results were surprising. I had all the markers of celiac disease, but no gluten intolerance. To cut a long story short I cut out all the grains minus oats, egg and most dairy. I am now lactose free, with milk, and have cut down fats in cheese, As a diabetic, I also cannot eat sugar. I am much better as the histamine flares hot flushes, and side effects from drinking tea and coffee

and other annoying intolerances were making me ill. Drinking alcohol or fizzy cola drinks is not advised as they can irritate the bowel lining. Vitamins may not be able to be absorbed. If you have another test with your thyroid levels, on levothyroxine if it is now 6 months down the line, this might show how you are reacting, to the drug. A change of formulation might make all the difference, as well as removing histamine flares. There are interesting articles online written by Isabella Wentz and Suzy Cohen in the US who write about histamine flares from gluten. Easy to search for under autoimmune disease.

If you have not had a test for blood sugar then may be you should see if you are pre diabetic/diabetic as this can bring on similar symptoms such as weakness fatigue pains in the joints. This may be done for free at certain pharmacies such as Lloyds. Some pharmacists are now dispensing pharmacists and can wrie prescriptions.

I can give details of the pharmacy chain throughout the UK who are linked to NHS, who do a thorough smart test with results back in about an hour while you have a cuppa. It is a finger prick test in a private room. Cost about £80. Your case history is taken, and you link back with the NHS.

I am sure you will find information from other folk who have had the op and have had side effects with Eltroxin and have changed their medication.

If you have IBD, then this has been linked to vitamin K deficiency, and Vitamin D3 can be prescribed if you need this. Tests for B12, and folates are necessary to rule out pernicious anaemia, which may be as a result of your colon problem not absorbing the vitamins. Take care.

birkie in reply to hawii60

Hi thanks for your reply ❤️

I've been on Eltroxin for a month gp has changed my levo many times been on mercury Pharma, advis, tried them all, when I had my thiyroid removed I had about 1month of light symptoms sweat reduced, shaking to,wasnt going to the loo as much had a bit of energy.. Was on 125gm of levo then noticed my hyper symptoms were returning surgeon noticed it to and reduced my levo till eventually I am on 50gm my hyper symptoms remain but seem to be getting worse as time goes on I don't think I should be having hyper symptoms after having my thiyroid removed but as I said could be attacking my parathyroids this has happened before.. I may be grasping at straws but I feel so unwell 😩😩😩

helvellaAdministrator in reply to birkie

Mercury Pharma levothyroxine is absolutely identical to Mercury Pharma Eltroxin (Mercury Pharama is part of Advanz).

It is very difficult foryou to know what is happening without having read your own blood test results. I suggest you ask your surgery for those. (Make sure you get the reference ranges as well.)

Post back and we will try to help.

birkie in reply to helvella

Hi helvella thanks for the reply❤️

My last bloods were done on the 12th Nov 2019 see below :

TSH... 3.53 mU/L... Ranges.. 0.30-4.50 mU/L

T3.. 2.3 pmol/L.. Ranges 3.10-6.80 pmol/L

T4.. 10.9 pmol/L ranges.. 11.00-22.00 pmol/L

I spoke to my endos secretary yesterday and she said my endo has commented on your bloods and you are nearly in range so I should be OK.. He did say up my dose to 75mg but that's not the problem it's the fact I'm having awful symptoms on this drug and I feel no better I've been on the higher dose and was hyper that's why my surgeon lowerd the dose from 125gm to 50gm in increments of 25mg I've felt no better in my health I'm still waiting to at least start to feel a little better but no I'm bedridden most days have absolutely no energy if I try to do something like housework I have bad tremors and sweat profusely my heart races I feel faint I have to sit down its a vicous circle and I've had enough.. 😭😭😭


Your previous post shows you are EXTREMELY under medicated on only 50mcg Levothyroxine

TSH.. 3.53. ( 0.30-4.50)

T3 2.3. (3.10-6.80)

T4 10.9. (11.00-22.00 )

FT3 is well below bottom of range

FT4 below bottom of range

You urgently need 25mcg dose increase in Levothyroxine

Was dose of Levothyroxine increased to 75mcg?

When extremely hypothyroid symptoms can be remarkably similar to symptoms of hyperthyroid

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Did you get bloods retested yesterday?

Obviously you need vitamin D tested

All three vitamins are far too low

Are you taking any vitamin supplements?

Ferritin is extremely low

GP needs to do full iron panel test for Anaemia. You are likely to need iron supplements

Low B12 will be causing pins and needles

Low B12 symptoms

Do you have any vitamin B complex or sublingual B12 you can take?

Supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

As your B12 is very low you may also need extra B12 Jarrow B12 sublingual lozenges or Better You B12 mouth spray are good options

birkie in reply to SlowDragon

Thanks for the reply ❤️

As I said in previous posts the levo is causing bad inflammation in my bowles was in bed new year curled up in a ball with hot water bottle because I had a really bad flare up I looked 6 months pregnant 😩 I was so swollen and in pain.

My gp rang me last Thursday to say he didn't want bloods done till another 3wks as I've only been on the Eltroxin for a month I don't know what the difference is between Eltroxin and levoroxine 🤔 it's not changed a thing.. Also he contacted the endo and just took advise never made me an appointment.. Gp did full iron came back as OK.. Also other vitamins ect came back as no action required eventho some are low.. I'm having vitamin D done in 3 weeks with thiyroid pannle and is a bully explained to him about the server shaking and sweating said I had hyper symptoms but he dismissed it and just told me to carry on with the 50gm Eltroxin.. I suppose I'm just going to put up with this till my bloods come bk and if theirs no improvement in my health I'm contacting my endos secretary to pass this info on to him and to tell him I'm struggling really bad.. I know my gp will not have passed this info on to my endo he knows I'm awful with synthetic meds but is just egnoring me like he did with the anti thiyroid meds I ended up in thiyroid storm I can see me ending up back in hospital again... 😭

SlowDragonAdministrator in reply to birkie

You need to send these results to your endocrinologist and request a dose increase and perhaps try liquid Levothyroxine. It can be easier to absorb and has less fillers

Can you see a different GP?

This one is leaving you seriously under treated

Your vitamin levels are terrible

B12 and folate very low. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets and not very expensive. Available on Amazon

Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

Low B12 symptoms

birkie in reply to SlowDragon

Hi thank you for your reply ❤️ to be quite honest slowDragon I'm so tired I feel like I'm in a coma I have no energy at all just getting to the loo is a chore.. As I said I saw my eye doctor yesterday for a test my eyes have become worse he said they were protruding slightly and that was probably the cause of them watering all the time.. I have decided to see what the next bloods are in 3 weeks I can't see them changing much as I'm only on 50gm Eltroxin so being armed with the results I will be contacting my endo and definitely not seeing that gp again.. 😔😔

bantam12 in reply to birkie

Have you had recent calcium and pth blood tests ? If you have primary hyperparathyroidism caused by an adenoma then you need surgery to remove it.

birkie in reply to bantam12

Hi bantam12

My last calcium test was in Oct last year when I was rushed in to hospital I had blood in my urine and the consultant said I'd passed a kidney stone he then noted my calcium level was slightly high and I was to inform my surgeon who removed my thiyroid in May I did but he said he was not bother about the levels so that was that 😔

bantam12 in reply to birkie

If your pth is also high you need to find an Endo and Surgeon who are bothered by it ! Levels in hpth do fluctuate which is why for many it's a long road to surgery but persistent high levels over time do need to be taken seriously and the scans should be done to locate the rogue pth gland. You do need both Endo and Surgeon who are very experienced in pth issues, many are not !!

The hot flushes and discomfort may be due to the menopause as well as the change of thyroid hormones. As your ferritin levels are very low along with low vitamin 12, and folate this is a sign of pernicious anaemia which makes you feel very weak. If you have allergens in your food or even in the thyroid hormone you are taking with fillers such as maize or wheat, you have a reaction to the fillers in the brand. If I were you I would go to the minor ailments advice at the pharmacist and explain what symptoms you are having, as this sounds more like a hypersensitivity to the product or a reaction with food you are taking.

If you have not had a test for gluten in your diet, it would be useful as gluten damages the thyroid over a period of years and can affect other organs. Gluten is added to so many foods labelled as wheat rye and barley you don't know until years later when the damage is done. If you are still eating gluten, after thyroid removal, the flares may be due to it. You should ask the GP if you need further help with B12 and folate on prescription and if you need an iron and ferritin supplement. Some doctors have tunnel vision and don't give alternatives or tests for your symptoms and this is what this website does - it shows you have to ask the right questions and ask for the right tests. We don't know what to ask for until someone points it out. I had hot flushes after drinking tea. I changed the brand and it was alright then it changed again. I went on phytoestrogen tablets and they did help. Hope you go back and have some basic blood tests gluten intolerance egg and dairy. It could make you feel better,

If your calcium levels are too high this can be a sign of kidney problems. It can be due to diet. As many vegetables are high in calcium, eating more in cheese and dairy can increase your calcium levels. Hypothyroid can lead to bladder and kidney stones but did not know hyperthyroid could give rise to high calcium in the blood. My daughter is hypothyroid and has had problems with ovarian cysts and kidney stones. Is your water hard in your district. Drinking bottled water might help. I filter my tap water as don't like chlorine and other additives. I cook and wash vegetables in filtered my hubby nuts ha!

birkie in reply to hawii60



High calcium levels are linked to hyperparathiyroidism the parathyroid glands I had this in 2004 I was very ill and the symptoms are the same my thiyroid was removed so I would only go hyper if I was over medicated or I was attacking my parathyroid glands I have several auto immune illnesses including colitis so it would not surprise me in the least if I was attacking my parathyroid glands... 🤔

White blood cells are those fighting an infection. If you have blood in the urine this is a sign of urinary tract infection and you can get feverish chills with this. May be go to your nurse with a water sample to test? She will arrange for a prescription for an antibiotic if it shows up. No need to reply

Ps If you are on any other medication may be it has side effects.

birkie in reply to hawii60

Hi again hawii60

I have no urinary infection raised white blood cells can also mean your body is fighting something to they can be raised when your attacking parts of the body.. Also I can't take antibiotics I was in hospital with a bad colitis flare they tried me on 5 different kinds of antibiotics I threw up on all of them and I was getting no better so consultant said I have a bad reaction to them I can't take many synthoid meds because they inflame my bowles and I vomet.. The medication I'm on is for fibro rhumertoid /ostio arthritis that's a pain med ibs for the colitis oprmezole for my stomach. Been on them since 2006...i leave 4 hours before taking them after my levo... 👍

hawii60 in reply to birkie

Autoimmune disease is because something you are ingesting is affecting you.

Your body is reacting to something you are eating in many autoimmune diseases such as fibromyalgia, thyroid, and bowel and diabetes. I do get that you already have had a parathyroid problem diagnosed. in which case this may need surgery. It is annoying that people who have multi autoimmune diseases have to go to separate specialists, for each one and nothing is joined up.

Gluten is a common factor in Colitis and IBS, Fibromyalgia, and thyroid and some rheumatic disease. Hope you can go back to your endo or arrange a scan for your parathyroid glands. This is very complex surgery as these glands are tucked behind. As you are on your thyroid trail gluten is an essential test, as it connects with the other autoimmune disease. Having tests just rules things out. I am sorry your doctor is saying your ferritin levels and B12 are normal when Shaw's has detected they are low, not low normal, or optimal. Expect if you start taking vitamin D3 at the right levels this may affect your iron levels but you may need to take a high level for at least two months and then lower the dose. This in turn may affect your calcium levels.

Vitamin K works to keep calcium levels in the blood normal with vitamin d. If your blood calcium goes up it means it can start affecting your arteries leaving deposits of calcium in them. Hope you keep crossing off all the possibilities before deciding on surgery. Greygoose on this thyroid website has a recent post on excess calcium in the body which can lead to heart failure.

hawii60 in reply to birkie

Synthroid drug interaction list includes adrenal insufficiency cardiovascular disease thyrotoxicosis diabetes seizures. Synthroid Drug Interactions You can cross match your symptoms with the yellow card report scheme by looking up graphs of the side effects to each organ of the body

by using the drug analysis alphabetical lost of drugs without filling in personal information.



I have no personal experience of thyroidectomy or hyperparathyroidism so can't really comment about those. However, looking at your results taken from your previous thread I can only say what others have said about how dire they are. It looks as though your doctors don't really understand how bad results like these can make you feel but, of course, there could be more going on:

TSH.. 3.53 mU/L(ranges 0.30-4.50 mU/L--

free T3 2.3 pmol/L(ranges--3.10-6.80 pmol/L(

T4 10.9 pmol/L(ranges--11.00-22.00 pmol/Lm

Most treated hypo patients need TSH below 1 with FT4 and FT3 in the upper part of the ranges. With such a low FT3 this will possibly be causing major symptoms, when mine was 2.8 (2.8-7.1) I could barely get out of bed and I needed looking after.

There is a list of thyroid hormone replacements on ThyroidUK's website, I can't link to the actual article because it's a pdf and everytime I click on it my computer locks up. It can be accessed from this page:

then scroll down and click on the link almost half way through the article where it says

You can access the medications document for Hypothyroidism here:

Medications for Hypothyroidism - v1.6 updated 4/10/19

It lists all that are available. If none of the Levo brands suit you there are alternatives listed there that your doctors can try. And of course there is NDT but you're unlikely to get that prescribed.

Serum folate-- 2.8 ug/L(ranges-->2.50ug/L

Almost folate deficiency. Possibly wont be treated by your doctor, if not then you can help yourself with either a folate supplement or a good B Complex such as Thorne Basic B or Igennus Super B. The aim is for a level at least half way through range. Always remember to leave off a B Complex before any blood tests as it contains Biotin which can give false results when Biotin is used in the testing procedure.

Vitamin B12--310 ng/L(ranges--197.00-771.00 ng/L

Although in range and not low enough for your doctor to consider further testing, there have been many patients with B12 in the 300s who have been found to need B12 injections.

Do you have any signs of B12 deficiency – check here:

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

Also, an Active B12 test is more useful than a Total B12 test (which is what you have had done) and you can get that done with Medichecks (fingerprick test available for £39 less 10% discount with code THYROIDUK). Anything less than 70 for Active B12 suggests testing for B12 deficiency.

Ferrtiin 26 ug/L(ranges--23.00-400.00 ug/L

Ferritin is recommended to be half way through range although that is a very wide range. I've seen it said that 130 is good for females and 150 for males.

Low ferritin can suggest iron deficiency anaemia so if not already done you need an iron panel and full blood count.

birkie in reply to SeasideSusie

Hi seasidesusie ❤️

You commented on my bloods results being dire and I agree I feel awful with those results.. I had just about had enough it was my birthday on Jan the 14th my lovely mates arranged a meal out its all 3 of our birthday in Jan were all capricorns... I took all day getting prepared like iorning my dress then resting did my hair then rested makeup is easy I was an Estee Lauder girl.. So can do it in no time😄 looking forward to seeing my friends I lasted for the meal because I was sitting down we moved in to another part of the restaurant but their was no seating lasted all of about 5 minutes standing could feel the shaking coming on then the beads of sweat on the forehead heart racing went home in a taxi and had server loose bowels was in bed for the next 2 days didn't see the Sunday was like I was in a coma my food intake was no different I don't eat curry or spicy food I keep to bland food but still had loose bowels with pain and swelling I look 6 months pregnant and believe me that's not possible as I have no womb.. I eventually got in touch with my endo sent an e-mail with my latest bloods the one you commented on and a list of symptoms... I got back.. The levo will not be causing the bowle/stomach problem / my blood work is OK as I'm nearly in range.... Is he mad??? Or just ignorent of thyroid illness I'm just sick of this now I'm getting nowhere... Its just the same as it was when both him and my gp forced me to take the anti thiyroid meds I ended up in thyroid storm and neither apologise for their incompetence their doing the same with the levo not looking at my symptom or my results just forcing me to take it... 😭😭😭😭

WebMD website has interesting information on how thyroid medication can give rise to symptoms you describe and to go back to the doctor. There are also foods which might react to the thyroxine. When you have a goitre these are goitergens but now you have only the supplement, may be these foods might react. Though raw vegetables such as cabbage can be goitre gens, cooked green vegetables such as cruciferous may not be a trigger factor. There is a specialist who grew up with a thyroid condition,The member name is HypothyroidNomore who has written a post and understands how thyroid hormones work.

It is rare to find a specialist who can actually explains how the body reacts with thyroxine with or without a thyroid gland.

Further information - most thyroxine drugs are synthetic. Eltroxin contains acacia and maize starch. Some people have allergies to these. However as you have recently had a thyroidectomy, and you have tried several brands of thyroid and have been told you have a problem with synthetic drugs, either you should change to one without other allergens such as brand Accord Barnstaple Marketed in the UK which is free from other additives or may be you should be prescribed natural dessicated thyroid by your endo. Other problems after a thyroidectomy can be adrenal crisis or fatigue which can happen to some people after going on levothyroxine. As you are getting no joy from the GP who is sending you on a round robin of referral, if it were me I would go to the minor injuries unit, where you will get a thorough examination and the right referral .

I think you are not improving and you need hospital advice as your bowel might be damaged by the drug carbimazole, you took, which may affect the liver bowels and your blood count. As you have symptoms of severe hypothyroid and the thyroid brand you are taking is not helping,you should discuss this with Boots or local dispenser, and an outside specialist at the minor injuries unit. I found the minor injuries invaluable, and better than local GP service ,

helvellaAdministrator in reply to hawii60

You mentioned:

brand Accord Barnstaple Marketed in the UK

as one "without other allergens". This confuses me! First, the product seems to be branded as Actavis (though the company is now called Accord-UK Ltd and is located in Barnstaple).

And it contains two forms of maize starch so it is definitely not suited to those who are sensitive to maize.

It also contains lactose which would normally be highlighted as a potential allergen in foods.

6.1 List of excipients

Also contains: lactose, magnesium stearate, maize starch, pregelatinised maize starch, stearic acid.

I am jumping in because any discussion about allergens needs to be very carefully worded so that people don't inadvertently consume something to which they are allergic.

hawii60 in reply to helvella

Yes you are right. It is difficult to find the correct information on the drug Activis as it was rebranded as Accord Healthcare, based in Ireland in 2017. As a food intolerance sufferer rather than an allergy sufferer, it took time to determine allergy intolerance as opposed to food intolerance. After reading information an allergen may affect swelling of the mouth and throat such as from orange juice making the lips swell or kiwi fruit. Two grandchildren with this allergic response. However food intolerance such as gluten, maize, rice and multigrain may be hard to diagnose unless you have a comprehensive food intolerance test. It also can take time for the histamine flare to be pinpointed to more than one food intolerance which may be termed allergen or sensitivity. All very confusing. I have an allergy to penicillin which developed the first time I took a generic formulation instead of the branded drug. I don't know if it was the colourant, titanium and other additives to this day. My fingers wrists and arms started to swell up, but antihistamines I had stopped it after rushing to the doctor who sent me away to buy some antihistamine over the counter!

Some posts seem to suggest that thyroid problems will make people more allergic to foods, which can be overcome with the correct level of thyroid hormones. How many people who do not have T3 prescriptions as they are told they don't need it, write to say they have more allergies and skin problems? My information should have said there were less potential allergens in Accord brand levothyroxine as other preparations may contain acacia ,as well as maize starch and corn starch eg (Eltroxin). Thank you for making me more aware of terminology.

Could not complete information re adrenal problems with some people after starting levothyroxine. The source is "."Thyroxine replacement precipitating

adrenal crisis "

Author affiliations Wirral University Hospital Foundation Trust - Withybus General Hospital Haverfordwest Pembrokeshire. Uk. 2009.

The article indicates that primary hypothyroidism and hypoadrenalism may occur concomitantly as part of auto immune syndromes. In some people the thyroxin precipitates an adrenal crisis. I worked part time as a medical secretary so understand a bit about how practices prioritise patients.

No need to reply.

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