Parathyroid Tumour

[bubbatetley]

Hi, any advice on parathyroid tumour please.

Much appreciated

Bubba

[shaws Administrator]

I am sorry if you have or think you have this condition. I don't know anything about it but the following link might be informative.

hopkinsmedicine.org/health/...

[bubbatetley in reply to shaws]

I am going to see an Endocrinologist Professor tomorrow, as my current Endo cannot make me symptom free. Praying he can help me.. I am very ill and even on combination of T4 and T3 still with no improvement.

Take care🙈🙉🙊

[bubbatetley in reply to bubbatetley]

I will look at that site ,thank you

[shaws Administrator in reply to bubbatetley]

Some people cannot improve on levothyroxine, even when some T3 is added. I had this experience, and have my thyroid gland. When I took T3 only, that's when symptoms resolved.

[bubbatetley in reply to shaws]

Hi Shaws hope you have a good weekend and are feeling better.. I went to see a Endocrinologist Professor today, I have a tumour on my Parathyroid and having more tests done.. I hope you don't mind me asking, but I see that you have been on Levothyroxine without much success and T3 too.. I am in the same situation with so many symptoms and feeling awful. Today he has now increased my T4 from 75 mcg to 100mcg and my T3 from 30mcg to 10mcg, do you think this may help please. I have been on T3 only, and felt great for about 4 weeks, then bang I hit the ground , I didnt have any T4, so then went back to combination of both, and here today again feeling wretched. PLEASE can you advise

Thank you Kind regards

Bubba

[shaws Administrator in reply to bubbatetley]

I wasn't alerted that you needed a response from me four days ago. In order to alert a member that you've included their name and you may require a response you have to put an @ before their name. You may get a few suggestions initially.

The following is an example. You want to contact me (or another member) so you put an @ before beginning the name and a selection may appear. You pick the one you want bubbatetley and name turns blue.

[bubbatetley in reply to shaws]

Sorry, but many days I have Brain fog and cannot get things together correctly, so please excuse any errors.

Take care

[shaws Administrator in reply to bubbatetley]

I am sorry you are struggling. I recovered my health on T3 alone. I had constant symptoms on levo but that's not to say everyone does.

Usually, when getting a combination of T4/T3, I've read that a 4:1 or 3:1 basis suits many.

When we are given T3 alone and after a few weeks if we still feel symptomatic we need an increase. The increase should be approx equal to 1/4 tablet (if on 100mcg of levo or 25mcg T3 so you cut in quarters and add 1/4 every couple of weeks until you're symptom-free.) Sometimes it could be the actual pill that may not agree with us, i.e. the fillers/binders in it. You will find the following link of interest. This doctor never prescribed levothyroxine. He only prescribed NDT or T3 alone for thyroid hormone patients.

naturalthyroidsolutions.com...

I know how we feel when the hormones aren't resolving symptoms or even giving us more.

[bubbatetley in reply to shaws]

Hi, I hope you're well. Did the Levo make you unwell and not respond to the medication?

[shaws Administrator in reply to bubbatetley]

Levo gave me more symptoms than I had before. I felt as bad as I did when diagnosed when TSH was 100.

[bubbatetley in reply to shaws]

Oh Dear, I am sorry you've had a bad time. May I asked please what symptoms you had, as I am feeling awful.. I have even been to see a professor in Endocrinology and he was absolutely useless.. My current Endo sent me as she cannot get me symptom free. I am taking Levo 75mcg daily and Liothyronine 20mcg daily and still feel wretched..

Any advice greatly appreciated please.

Take care

kind regrds

Bubba

[shaws Administrator in reply to bubbatetley]

I felt so much worse when taking levothyroxine than I had before I diagnosed myself - GP phoning a couple of day before to give me information about the 23 blood tests he took and told me they were all fine and nothng was wrong. The only fact is that he thought that a TSH of 97.5 was o.k. but I felt everything was wrong - nothing was working.

Do you take your dose once daily or do you split your dose?

Thankfully my own test a couple of days later than GPs showed 100 TSH but the hospital phoned another GP to ask why hadn't I already been given a presciption. This doctor phoned and asked me 'who gave you a blood test form'? I said I did She said you're hypo come and get a prescription - I cried.

If the Endo nor a Professor cannot help you (and I'm assuming they are only considering the blood tests but not your clinical symptoms) I think, and I am not medically qualified, the more I reduced T4 and increased T3 the better I became. It resolved all my symptoms.

Many millions do fine on levothyroxine but there is a section who cannot and do not. Some find NDT (natural dessicated thyriod hormones - the original prescribed since 1892 - stopped in the UK through misinformation given by the BTA.

I have also read that a combination of 1 to 3 or 1 to 4 works for many (T3/T4).

Also make sure your vitamins./minerals are also optimal.

[bubbatetley in reply to shaws]

Thank you Shaws, Good evening. I take my Levothyroxine 100mcg Once a day early evening and my T3 5mcg twice a day.

regards

Bubba

[HashiFedUp in reply to bubbatetley]

I’m the same with Hashimoto’s- even with t4/t3 I’m still not well. Good luck. Feel your pain. Why are you concerned about parathyroid tumours? It’s a different glad to Thyroid isn’t it?

[Den1987UK in reply to HashiFedUp]

Hello HashiFedUp good evening the parathyroid glands is part of the thyroid but separate from the thyroid gland there are four on each side of the thyroid adjacent to it .

[bantam12 in reply to Den1987UK]

It isn't part of the thyroid they aren't connected in any way other than location, they have very different functions.

[Den1987UK in reply to bantam12]

hello banam12 Good evening I know they are same location but different function PTH by the four parathyroid glands located on each side of the thyroid adjacent that help control calcium homeostasis .

collectedmed.com/index.php/...

[bantam12 in reply to Den1987UK]

I know I had hyperparathyroidism and surgery a few years ago but haven't had a thyroid for many years. I also ran a forum for parathyroid disease.

[Den1987UK in reply to bantam12]

hello bantam12 sorry to hear that but hope you are a little better . You are a godsend for helping other people who suffer with the same condition and want to say thank you . I have heard of hyperparathyroidism and know it ain't pleasant . I have a different condition hypothyroidism possible hashimotos trying to get diagnosed had it for two years and feel terrible . At 32 years old and a guy it's a huge awakening recently my brother was diagnosed with hypothyroidism what are the chances of that happening I would say not often . got a MRI on 16th January for thyroid and neck. I am praying all is going to be okay .

[vocalEK in reply to Den1987UK]

I would say the odds are higher than you might think, given the fact that thyroid problems tend to run in families. My mother was hypothyroid, so am I, and I suspect my sons are, too.

[Den1987UK in reply to vocalEK]

Hello vocalEK good evening Thank you I was trying to find out if my mum had hypothyroidism but my mum said she had a blood test but came back negative and normal. I would have liked to see the blood test results but may never find out I have helped my mum sign up for online access so maybe that would give answers. My dad as far as we know don’t have it so not sure where it came from otherwise. Just me and my brother that has hypothyroidism. Only one great great aunt that had hypothyroidism but nothing on both side of the family recently as far as I know.

[bubbatetley in reply to Den1987UK]

Good Luck for MRI on Wednesday, stay positive , im sure all will be ok

[Den1987UK in reply to bubbatetley]

Hello bubatetley good afternoon thank you

[bubbatetley in reply to Den1987UK]

Hi Den, hope youre ok? How did the Hosp appt go? Hope it was good news.

Take care

Bubba 🐬

[Indykim]

I went to mayo today..same issue. Don’t feel like I got any answers or help. They just want me to spend more time, money seeing their endo, getting the same labs done I just got two months ago. Waiting four months to see the next doc when I have tons of sxs for months already. So frustrating!!! Going to get a second opion.

[Lora7again]

Have you read this recent thread

healthunlocked.com/thyroidu...

[pritamlp]

I have experience of Hyperparathyroidism . Parathyroid are four small glands which mostly remain behind thyroid glands inside neck. The main function of Parathyroid gland is to monitor calcium level in blood. You have to do blood test of Clacium (Total), Calcium(ionised), Parathyroid Harmone Test PTH, Vitamin D regurlarly. If your blood Caclium remain high >10.5 (or >2.6mmol/L) for long time and PTH is much more than normal value =65 pg/mL and you have symptoms of unhealthy then there are chances of Parathyroid adenoma. If the hyperparathyroidism(or parathyroid is adenoma, than it has to be removed by surgery with the experienced one. The most difficult part is to localised the adenoma parathyroid because there are four parathyroid glands. Localisation can be done with Sestam bi scan and Altrasound. For detail, please check the webpage of Dr Nomans Parathyroid Centre exist in Trampa, Florida, USA. Wish you success and good health at earliest. Pritam

[Shellian]

Hi Bubbatetley,

Sorry to hear you are not well.

I had a parathyroid tumour as well as medullary thyroid cancer as part of my condition which is (Multiple Endocrine Neoplasia ) MEN2a. I did not know I had this but was gradually becoming quite ill. Check the Amend website, or if you have facebook, I think they have a page on there. Amend is the support group for people with any of the MEN conditions and they have lots of information on there.

Good luck.

[Jivedancer]

Hi not had it myself but my partner had it many years ago and had it removed but I think he had to go privately as NHS doctor told him it didn't need doing but obviously it did hope this helps?

[RhubarbGiraffe]

I had hyperparathyroidism. One small tumour on one of the 4 glands. Was found when I got kidney stones and subsequently discovered by blood calcium was very high. Tumour removed, now fine, although my kidneys are full of calcium deposits. This site is excellent: parathyroid.com/parathyroid...

I went privately, just because I happened to be covered by my partner's insurance at the time. A friend has the same thing now and has been waiting about 6 months on the NHS, having to drink 3 litres of water a day throughout.

[SlowDragon Administrator]

Your calcium levels are low

healthunlocked.com/thyroidu...

Why do you/medics suspect parathyroid?

As pritamlp says calcium would be much higher if parathyroid tumour

[bubbatetley in reply to SlowDragon]

They did an ultra sound and found the tumor.. Today I went to see the Endo professor, well what a complete waste of time, I knew more than he did.. He is doing more bloods, which are

Cortisol

Iron Studies

LFTs

B12 and Folate

Ferritin

Vitamin D

I am very disappointed with the today's outcome..

Have a good weekend

[SlowDragon Administrator in reply to bubbatetley]

Did you download the calcium pro app

calciumpro.com

Put results in the app

[bubbatetley in reply to SlowDragon]

Hi, I am looking at the app now. Not been well, just for a change.

I hope you are OK?

Thankyou😘

[msb44]

I had a very slightly elevated calcium level, 10.7, to which two doctors said, "that's okay." Yet once I did the research myself, had a PTH level checked. Long story short, I had a parathyroid tumor in one gland and a second one starting to enlarge. Note: one may survive well with just half of a gland, so only having two is not a problem.

Calcium here in the US is often given a range of 9-10.5. Yet, the range for adults over 35 is actually only 9-9.9. Younger people aged 20-35 can have the slightly higher range going to 100.5.

One needs to check the parathyroid hormone level to evaluate the parathyroids.

My daughter, who had symptoms of being very tired, and some brain fog, (similar to thyroid issues, right?) never had elevated calcium. Always in the 9s. But I asked her to get a baseline check. At surgery, she had two parathyroid tumors, and a funny looking lymph node.

Long story short, she had papillary cancer and is being treated for Hashimoto's post thyroidectomy.

[Shelty]

I have a parathyroid adenoma giving rise to high calcium in the blood and high parathyroid hormone. It makes you feel really ill and I am awaiting an operation which is according to my endo is the only way out. You may find parathyroid.com on google useful. Good luck!

[joymor]

Get it out... there is no other cure.

[bubbatetley in reply to joymor]

Thank you Joymor , yes , that is what I will do, had some more tests today and went to see a Professor in Endocrinology my first visit today, and what a waste of time, he was really only interested in my ranges and not my symptoms.. I've decided now that any of the Endo Medical TEAM are pretty USELESS.. I am so unwell and really struggling with all of this wretched disease.. So he has now increased my Levothyroxine to 100mcg from 75mcg and my Liothyronine decreased from 20 to 10 mcg, fingers crossed this HELPS ME!!!!

Have a good weekend

kind regards

Bubba

[Den1987UK]

Hello bubbatetley I am sorry for what you are going through . I know it's hard right now but you have to be strong . I am not an expert but I do know the parathyroid is located on the thyroid you might have to have part or full thyroidsectomy but you will be okay and will be fine .

[bubbatetley in reply to Den1987UK]

Thank you Den I feel awful, went to see a Professor in Endo and he was absolutely useless, I've come to the conclusion that all these Endo medics DO NOT KNOW ENOUGH !!!!!!

I am now waiting for more tests to be done for the Parathyroid, so here

we go again..

I do hope you are ok and hanging on in there!!!

Take care

Kind regards

Bubba 🤮

[Den1987UK in reply to bubbatetley]

Hello bubbatetley good afternoon yes it really is awful treatment we get in the UK for hypothyroidism and other thyroid conditions and diseases lately and it ain't getting better I know that . I am the same as yourself , just hanging in there and trying to get better and arguing with the NHS GP at the moment over malpractice and not treating my hypothyroidism and other conditions properly .

[bubbatetley in reply to Den1987UK]

I second that Den!! 👍

[Andorian]

If you have a parathyroid adenoma, you will need to have it removed. It's a benign tumour which grows on one of the four parathyroid glands behind your thyroid. There is no other treatment available and the high levels of parathyroid hormone will leach calcium out of your bones and into your blood and urine. This can lead in time to all sorts of health complications, such as kidney stones and osteoporosis.

I had an adenoma removed six months ago. I had a radionuclide imaging scan first to locate exactly where it was. It was a complicated operation for me, as my thyroid was very swollen because of my Hashimoto's, so they needed to remove half of it. I also have neck arthritis which made anaesthesia and neck access difficult.

I gather though, that in the majority of cases, it's a very straightforward procedure which can be done in day surgery and may not require having any of your thyroid removed.

Despite my complications, it was very much worth doing, as I feel so much better now. I no longer suffer from bouts of terrible fatigue, insomnia, heart palpitations, constantly urinating and having to drink water and my brain fog has also cleared. This is despite the fact that I obviously still have Hashimoto's.

So I would say, if it definitely is an adenoma, you should go for the op. as it will not get better by itself. Best wishes.

[bubbatetley in reply to Andorian]

Thank you Andorian, this is all a nightmare and I am struggling with lots of symptoms and generally feeling ill.. Violent headaches daily, insomnia. constantly urinating, Brain fog, the list is endless..

I do hope you are better now, be strong and hang on in there.

Take care

Kind regards

Bubba 👧

[Andorian]

Thanks for the kind wishes. I am much better now and hope things work out well for you too.