in August 2022, I had my total thyroid and total parathyroid removed, they were both so enlarged that they were suffocating me, this was only discovered when the operation was performed, though I had been suffering serious breathing problems for the preceding year and had been prescribed various inhalers and regular prescriptions of steroids which I kept saying were not doing anything to help. I was eventually referred to the heart failure clinic but was given a clear bill if health. At the last NHS appointment with my thyroid specialist I was told he intended to refer me back to GP care at this point I said he couldn’t do that as I felt so ill. I also discussed why I was on cabisomol as .18 months earlier I had had radioactive treatment. He said that should have been stoped at that time.
after consultation I felt so Ill I decided to go down the private route I saw a consultant who said immediately that I should have a full thyroid removal as there was multiple modules and a goitre growing under my bone at base of neck. He also said I needed a parathyroid removed and this would be confirmed by a special scan my calcium levels were high and my parathyroid level was 13.4 which was about double what the normal reading should be. When the consultant did the operation it was necessary to remove the full parathyroid as it was diseased . This was when he found that the thyroid and parathyroid were causing me to be suffocated this had been the problem with my breathing all along.
after the operation the diopside of my thyroid has shown that there was cancer in my thyroid.
I was initially put on 100mg of Levothyroxine
After the first 8 weeks of surgery all the symptoms of anxiety and depression disappeared and I felt wonderful unfortunately after this time all of these the symptoms have returned The dose of thyroxine was increased to 150mg but has since been reduced to 125mg
My last reading on this dosage has been
TSH 1.34
Calcium 2.36
Vitamin D 0.59
Really what I need to know if anyone is suffering high anxiety/ depression following the removal of thyroid and parathyroid. Also
Does the reading of T3 or T4 apply when you’ve had them both removed
I am on treatment for depression but am trying to establish if this is caused by my thyroid situation or my emotion health any advice would be gratefully received thank you
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Cbreeze1961
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Are you saying you had radioactive iodine and stayed on cabisomol ? (Carbimazole, or something else?) an anti thyroid for another 18 months?
Usually levothyroxine it prescribed soon after RAI treatment. You likely would have been very hypothyroid and this could have resulted in the residual thyroid to swell.
What was reason for RAI & what dose of carbimazole were you taking.
Do you know what was your FT4 & FT3 was prior to surgery.
The TSH (thyroid stimulating hormone) is a pituitary hormone which stimulates the (now missing) thyroid. Once you’ve been hyper the TSH becomes down regulated, it’s especially unreliable & the focus should always be the FT4 & FT3.
Levothyoxine is replacing what T4 the thyroid makes. Your body has to convert a portion to FT3 as there is 0 produced from thyroid. So it’s important to measure them to ensure the replacement is adequate.
If doctors are going by TSH it’s completely inadequate. you need to know how effective the replacement is working by measuring FT4 & FT3. Most feel well if FT4 is top 3rd of range and FT3 at least mid point. Ranges vary so always include them.
Were you originally diagnosed with Graves and why you were prescribed Carbimazole and then treated with RAI thyroid ablation.
I'm truly sorry your Carbimazole wasn't stopped pre the RAI treatment which has likely contributed to your having to go through further surgery and a full thyroidectomy and loss of your parathyroid glands.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T4 - Levothyroxine is a storage hormone that needs to be converted by your body into T3 the active hormone which is said to be around 4 times more powerful than T4.
The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
We generally feel at our best when our T4 is in the top quadrant of it's ranges as this should in theory convert to a good level of T3 at around a 1/4 ratio T3/T4.
Your own ability to convert the T4 into T3 can be compromised by non optimal levels of core strength vitamins and minerals - namely those of ferritin, folate, B12 and vitamin D and inflammation, antibodies, and any physiological stress ( emotional or physical ) depression, dieting and ageing can also down regulate T4 to T3 conversion.
Since you have no working thyroid it is essential that you are not dosed on your TSH reading but on your Free T3 and Free T4 readings with a view to have both these essential, vital hormones within the ranges and hormonal balance restored, probably by taking both T3 - Liothyronine and T4 - Levothyroxine but we first need the actual blood tests as detailed above to confirm your next best step back to better health.
Some people can get by o T4 only:
Some people find that T4 seems to stop working for them and need to add in a little bit of T3 - probably to replace that little bit lost when the thyroid was removed :
Some people can't tolerate T4 - Levothyroxine and need to take T3 - Liothyronine only.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same hormones as the human gland and derived from pig thyroid dried and ground down into tablets referred to as grains.
If your doctor is unable to run the relevant blood tests for you, there are private companies who can and you will find these within the Thyroid UK website who are the charity who support this forum thyroiduk.org
We can read the results for you and advise accordingly and this is generally where we all start off in order to reclaim back our health and well being, just one step at a time.
You will no doubt need to become your own best advocate but you are not alone as we are a patient to patient forum and there is a wealth of knowledge, help and support here.
“The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.”
Good morning Cbreeze1961,Sorry to hear that you still do not feel well after your thyroidectomy.
Do you know what type of cancer was found in your thyroid? Medullary Cancer and non- cancerous tumours on the parathyroid can be linked by a rare genetic condition called Multiple Endocrine Neoplasia (MEN2a). I have this condition, as do other family members.
Usually when your parathyroid is removed, the surgeon will try and leave the non diseased ones in tact, there are usually four patathyroids which are only the size of a grain of rice I think. If having extensive neck surgery too, as I did, they try and squash one back up and replant it, hoping it will work. Unfortunately, I believe, in many cases, this does not work.
In my case mine did not work so I now have hypoparathyroidism as well.
It is important that Calcium levels are kept stable on the low side of normal. 2.36 I think is ok, my reading is usually, about the same, although my consultant liked it at 2.26. Fluctuations in calcium can be felt daily and being too high or too low can cause problems. I am learning to manage my calcium levels. You should be taking medication as you cannot produce PTH anymore your body is unable to convert Vit D to metabolise calcium on the body. I take levothyroxine and One-Alpha daily.
I am learning more about hypoparathyroidism by following the parathyroid uk website and feel that it is this that causes most of my symptoms, rather than being hypothyroid.
You need to be monitored regularly by a consultant, not just your GP as GPs know and understand very little about hypoparathyroidism.
If your cancer was Medullary it might also be worth you checking the AMEND website for more information about MEN2a as your family may also need checking out.
Can I ask a question about calcium, do you supplement with it now you have no working parathyroid glands?
I had two removed but if I don’t take calcium now my levels go below range. However my pth seems to be working normally ie it gets high when calcium is low.
Hi Spangke15, I don't supplement with calcium anymore. I used to take Adval but it didn't agree with me. I take OneAlpha which is a very potent hormone. It is alfacalcidol, it is called a Vitamin D analogue. It is this that controls the level of calcium and phosphate now. If I eat healthily I can now manage without extra calcium supplements. If I'm getting low on calcium, I can recognise the signs now and eat a yogurt or a piece of cheese. There is no way you forget to take these tablets as Calcium doesn't stay in your body the way thyroxine does and I get the familiar tingling and pins and needles.
If you look at the part called Living with Hypoparathyroidism on the Parathyroid uk website there are some very good tips for managing levels. My worst symptoms are brain fog, fatigue and anxiety when I am low and itching all over sometimes, I think that is when I am high or when my phosphate levels are high. Haven't quite worked that out yet.
Good luck in stabilising your own levels. It's a fine balance.
Thank you so much for replying in such detail, it’s really helpful.
I didn’t know that about calcium not staying in your body.
I am actually starting to wonder if there is something else going on as I’m not absorbing calcium from my diet. And it’s not connected to my parathyroid as I have two remaining that are ok.
But I do have fatigue so it’s definitely an issue.
Hi Spangle15 and Batty1, Spangle do you know for sure that your other parathyroids are working properly because sometimes they can stop worki g after the trauma of a thyroidectomy.
If you are not absorbing calcium from your diet maybe you do need the calciferol?
Batty1 makes a good point, recently I have been supplementing with ordinary Vit D3 ( Doctor's Best 5000iu from Amazon and Vit K2 drops) as new advice and research has shown that this can be beneficial, even tho it won't be used for Calcium. I guess Vit D3 us also used in different ways by the body. Since my op ( 14 years ago I think) my Vit D levels have been very low. Since taking g the supplement I haven't been tested but I feel so much better. Maybe worth a try?
I think my parathyroid glands were fine after my thyroidectomy as that was over 25 years ago and the calcium issues didn’t start until the last few years.
I will see how things go but might mention calciferol to my endo. I’m already taking vitamin D, but thank you.
Thank you Shellian for your reply I’m not sure what type of cancer it is but I am going to find out as reading your reply has caused me some concern. My husband died suddenly of an aggressive cancer which was missed by the medical teams I know it is not linked but it makes me more determined to ensure that every aspect of the thyroid and parathyroid issues are looked at. Also my daughter has been trying for a baby and has had two miscarriages this year and I have read that thyroid issues can cause problems.
The surgeon who removed the total thyroid and parathyroid did so because there was multiple nodules and 2 of the parathyroids definately needed removal but both the thyroid and parathyroid were that enlarged they were suffocating me so had no option but total removal. I had to go privately to get this procedure done as the NHS Doctor said the procedure was not necessary. The surgeon who did the operation does 90% of operations in the northern area and does NHS and private work, he was the only person who would listen to me. I really believe he saved my life. Once by removing thyroids re suffocation and secondly by the cancer being found. I have every faith in him and believe he made the right decisions
Because all the anxiety has returned and I feel so dreadful and exhausted at times and not coping with every day life, these were all symptoms that I had prior to surgery but which disappeared completely for 9 weeks after surgery I am going to contact the consultant to ask for him to arrange all the blood tests that people mention on here to see if there is some medication that needs adjusting, I feel I cannot go on feeling like this indefinitely if something can be adjusted.
I read all the posts although my knowledge of the readings is nil
It will all come together just like doing a jigsaw puzzle -
first with no picture nor corners or straight pieces to be seen - then something clicks into place and makes a bit of sense, and slowly a picture evolves and you see the missing pieces quite clearly.
Just try reading other posts on the forum and maybe looking to Thyroid UK - the charity who supports this forum for further details of all things thyroid - thyroiduk.org
You'll get there - this is a patient to patient forum and we are here giving back as we too have been in similar situations and now better placed to give back to others who are looking for help, support and understanding.
thank you so much for taking the time to reply. I must admit I feel like a fish out of water and personally feel that I’ve had no follow up help from my doctor. Maybe because I went down private route and she and NHS consultant were both saying no need for surgical intervention when there clearly was, thank goodness for forums like this happy new year c xx
Going private should not change how your doctor treats you - it would seem no matter how common hypothyroidism is, it does appear poorly understood and treated.
You are not alone with all this this and there are forum members here with a wealth and breadth of knowledge so just keep reading around and it does all fall into place and you ca get back better health and well being following a few basic stepping stones
wow. That is quite unusual and actually very dangerous if you are not supplementing with calcium. You should also supplement with vitamin D and magnesium as these all work in tandem kind of like how if you supplement with iron you should also take it with vitamin C. I can give you the name of a Facebook group I’m in for hyperparathyroidism.
hi hollihobbi thanks for reply, yes I think consultant surgeon got quite a l shock when he operated and how bad the situation was regarding the swelling and suffocation he said he didn’t know how I was managing to breath. Also I think with his experience he takes about 90% of the parathyroids out in the area I think he could probably tell there was more disease in the thyroid I had multiple nodules and a large goitre growing down below the spectrum, I am only taking 125mg of Levothyroxine mon to thurs and 100mg Fri to Sunday like I said in earlier posts my anxiety is so bad at times I find it difficult to function. My husband died 4 years ago and the NHS have labelled And treated mr for bereavement and depression but I feel that it is more medical than that. I need to have the correct tests to prove one way or another what is causing my anxiety to be so bad. I feel I should be having more tests especially as I have no thyroid or parathyroid as you say dangerous if not right.
I would really appreciate you sending on the Facebook details
You seem to be so well clued up on the issues i have I don’t suppose you could do a rough list of what tests you think might be appropriate to my situation I appreciate you are not medically trained but just very knowledgeable and passionate about this subject thank you for your help c xx
Hi Cbreeze1961 .. i know this post is from a couple of months ago , but thought i'd add my reply here after reading your recent reply on the other post about self referral.
As you have struggled to get proper care and follow up advice previously , and have now had all 4 parathyroid glands removed + total thyroidectomy~ i just wanted to make sure you are now being properly monitored for your thyroid hormone levels fT4/ fT3 / TSH .
AND importantly~ properly monitored for your Calcium levels....... ? i don't know much about parathyroid issues , but i do know that it is highly unusual to remove all 4 totally .. so just wanted to check your calcium level are being properly monitored if the surgeon did indeed remove all 4 (and not replace at least a small portion of one of them somewhere else , which is what they usually do , i think ?) .
The website parathyroid.com is very helpful for parathyroid issues...and i just found this page they have about the extremely rare issue of having all 4 totally removed ~leading to hypOparathyroidism. parathyroid.com/low-calcium...
if you need any help with understanding you thyroid tests to make sure your Levothyroxine dose is being adjusted correctly (or anything else) , please do post your latest results on here and more knowledgeable people than me will be very happy to help .
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