Tomorrow I have an appointment with a surgeon to discuss taking out my thyroid. My endocrinologist recommends it and, I agree.
My endo stated that he will see me in 30 days after my surgery, to do blood work however, I will not be put on any medications right after the surgery! That sounds crazy to me. No thyroid and no meds to replace the hormones? I'm currently hyperactive hashimotos. This endo has made me suffer for a year already and I'm scared about what to expect after the surgery.
Any advice or stories about your surgeries would be greatly appreciated. Thank you!
Rita
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Rweir39
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Please think again about having it out. Your endo does not sound very capable of looking after you and I had one like that too. I have regretted it ever since. Your thyroid levels will drop very quickly after surgery. I had the op (I had Graves) on a Monday and started levothyroxine five days later. The operation was simple but thyroid treatment must include Liothyronine as well as Levothyroxine. I went for six years of half a life on Levothyroxine only and it was only by finding this forum that I began to improve with T3 added. Let me say I had already discovered it and managed to get a private endo to prescribe it but he knew nothing about how to use it. This forum flagged up all the low vitamins and minerals I was suffering from after years of Levo only.
Oh dear. That all sounds very bad news but you are already on this forum and will get all the help you need, so good luck with your decision and do make sure you will be allowed T3.
If your hyperthyroidism can't be controlled with medication, or you have a goitre that is causing problems then removing your thyroid is reasonable. If your current hormone levels are high, especially fT4 then it would be reasonable to wait a while before assessing you but a month seems too long. I wonder if your endo is paying more attention to their diary than to their patient?
My endo is surely not paying attention to me ha! I'm the one asking for tests based on this forum. He use to only test THS and nothing else. It's too late to change him but, I will once I'm stable after the surgery. s!
If my endo had made me ‘suffer for a year’ then I’m not sure he would be someone I would want to be advising / treating me.
Can you get a second opinion? You may still need / want the operation but you need to consider how well your endo will look after you once your thyroid has been removed and whether or not you feel confident that he will look after you.
If you don’t feel he has looked after you well before your operation then something makes me think things won’t get any better for you afterwards unless you find someone you feel happy with.
You're right about this and I'm very nervous but, no endo will take me right now. They all have 3-4 months wait and they don't know my history. I will need to be my own advocate and stay on top of this guy. I need this surgery and can't wait anymore. Thank you for the advise
I've gone back and read all your posts. You really have been put through the mill. None of the doctors you've mentioned in your posts sound as if they really knew what they were doing.
Do you understand what has been happening to you over the last year? Whatever treatment you have, I think it is important for your own future peace of mind that you understand why things happened the way they did and that, in the end, you got the right treatment for your circumstances.
There are lots of people on this forum who had their thyroids removed or had RAI and regretted it.
But, on the other hand, there are also people who wish they had had RAI or had their thyroids removed earlier than they did because it changed their lives for the better and it stopped them suffering.
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One thing you haven't mentioned (or I just haven't noticed) is whether you have a confirmed diagnosis of Graves' Disease. Have you ever had testing for it? People can have both Graves' Disease and Hashimoto's Thyroiditis in the same body, and it is particularly hard to control the thyroid hormone levels under these circumstances.
If you have Graves' Disease then avoiding RAI was absolutely the right decision I think. People with Graves' who get RAI are at higher than normal risk of getting Thyroid Eye Disease after it.
(Please note I am not knowledgeable about Graves'. I have non-autoimmune hypothyroidism. I'm also not a doctor.)
A good link on all things related to Graves' Disease is this one :
Look at the Articles, Blog and Resources section for all sorts of info on the subject of Graves' and other autoimmune diseases.
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Hashi's :
When Hashi's is active it kills cells in the thyroid. Those dead cells contain thyroid hormones which are released into the body and these "extra" hormones can be measured in thyroid function testing. Free T4 and Free T3 will rise, and TSH will drop in response to the raised Free T4 and Free T3.
But once the thyroid hormones have been released from a dead thyroid cell that cell will never produce thyroid hormone again.
The result is that the thyroid gets smaller and smaller over time. The rate at which the thyroid is destroyed varies from person to person. It isn't usually a quick process, and can take many years.
Eventually the patient becomes hypothyroid permanently because there is too little thyroid left to produce enough thyroid hormone even when cells are dying.
Antibodies can be active or inactive and they can fluctuate from one state to the other constantly. You might go through a phase where the antibodies are active for a long time, or they may only be active for a day or two before going quiet again.
One way that people have found helps them to live with Hashi's is to find what triggers their antibodies to become active. Diet is the usual culprit. Things that different people have found helped them is giving up their trigger foods (most people only do one of these things - nobody does them all, because they'd have nothing left they could eat! I've only given up gluten.) Unfortunately, finding trigger foods can be difficult and is trial and error.
1) Gluten
2) Animal milks - they contain lactose and casein.
3) Nightshades
4) Histamine containing foods
5) FODMAPS
People with thyroid disease almost all end up with unhealthy guts - stomach, intestines and bowel - and many of us work hard to help heal our guts. Anything and everything that helps to heal the gut will help people with autoimmune problems. The aim is to reduce the activity of the antibodies they have, and also to reduce the numbers of antibodies. We have to find what it is that works for us individually. Taking high-dose probiotics (or making our own), preparing and eating fermented vegetables, cutting out the things that make us feel ill, whether that be grains or nightshades or whatever.
Healing the gut is a huge subject, and I can't really do it justice. But it is well worth the effort.
Another issue to be aware of is that many people have indigestion and to deal with they take antacids, or Zantac, or PPIs like Omeprazole. The problem is that the stomach needs acid to work properly. Having too little stomach acid can encourage SIBO (Small intestinal bacterial overgrowth ) to develop, which may have an effect on antibody levels and activity.
It may be hard to believe if you hadn't heard this before, but the symptoms of having too little stomach acid make people think they have too much. Unfortunately weaning off antacids, Zantac, and PPIs is difficult, and can take ages. And some people taking certain medications e.g. some painkillers for example, can't come off them anyway. But if the only reason for taking the acid reducers is because of indigestion then it is worth the effort of coming off them.
Time to move on to Graves' - a condition I know little about :
The main difference that I know of between Hashi's and Graves' is that having Graves' antibodies makes cells in the thyroid over-produce thyroid hormones, and encourages the growth of more cells, thus (possibly) creating a goitre. Graves' does not destroy cells in the thyroid like Hashi's does. Instead the cells can keep on producing thyroid hormones over and over again. So the condition doesn't burn out or die out like Hashi's does.
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Treatment :
For Hashi's when patient doesn't have Graves' Disease as well :
If thyroid antibodies are active and lots of cells are being killed off then thyroid hormone levels may be high. Under these circumstances Levothyroxine should NOT be taken. You have enough thyroid hormone already without adding more.
You would probably need beta blockers to slow your heart down. As far as I know, under these circumstances anti-thyroid drugs will achieve nothing and shouldn't be taken. helvella Am I right or wrong?
When/if thyroid antibody activity dies down then fewer beta blockers will be needed, or possibly none at all. You may find yourself being/feeling very hypo. Your excessive thyroid hormone levels will drop, and you may end up with too little, Free T4 and Free T3 will be low, and TSH high. At this stage you will need Levothyroxine.
If thyroid antibodies become active/inactive frequently then testing must be done frequently to try and keep up with what is going on. Unfortunately, when doctors see low TSH, they cut off Levo, and then leave the patient to become very hypothyroid when antibody activity drops again, because they haven't a clue how Hashi's works.
For Hashi's when patient does have Graves' Disease as well :
This is the difficult one, so I warn you now, I'm going to be vague.
When thyroid hormone levels are high, as far as I know it can be impossible to know whether thyroid hormones have come from Graves' antibodies encouraging the production of thyroid hormone from normal thyroid cells, or whether the thyroid hormones have come from the destruction of thyroid cells by Hashi's antibodies.
If thyroid hormone levels are very low and TSH is very high, one can safely assume that the Graves's antibodies are not active, and Levo should be given so that the patient has enough thyroid hormone. Anti-thyroid drugs should not be given under these circumstances.
Surgical treatment :
If someone has Hashi's and Graves' then removal of the thyroid may be the only realistic option. The patient then becomes permanently hypothyroid and has to take substitute thyroid hormones (Levo, something like Armour, or T3, or possibly a combo of a couple of these - Levo + T3, Armour + Levo, or Armour + T3. Unfortunately many doctors are only happy prescribing Levothyroxine. Removal of the thyroid will get rid of the Hashi's antibodies. But Graves' antibodies don't disappear with the removal of the thyroid and they can go on to damage other organs, particularly the eyes (Thyroid Eye Disease).
If someone has Hashi's that is out of control then they may decide that removing the thyroid is their best choice, and then they become permanently hypothyroid. But they may want to try dietary methods to improve the health of the gut and reduce antibody numbers first. In the meantime they may swing from hypo to hyper. But they are not really hyperthyroid under these circumstances, they are going through a Hashi's flare and will become hypothyroid again.
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I really hope the stuff I've written about Graves' is not total nonsense. And I hope you can make sense of what I've written generally.
Thank you for the detailed information! My Dr never tested me for graves because he said that the treatment for hashimotos (which I am) is the same for graves. I'm hyper hashimotos but, now with your information I'm concerned about graves affecting my eyes! I started out being hypo and then turned hyper and no matter how much meds he's given me, I'm still extremely hyper with very high antibodies.
I also have nodules and one of them had hurtle cell changes which made me decide towards surgery.
Today I will talk to this surgeon about my concerns and your information. I greatly appreciate it, thank you!
I was given Levothyroxine the morning after surgery. If you are hyperthyroid then a few days delay may be warranted but I think a month is too long. Discuss it with your surgeon who can initiate Levothyroxine before you are discharged.
Do try to find out whether you ever had a confirmed diagnosis of Graves in addition to Hashimoto's. The tests are Thyroid stimulating immunoglobulin (TSI) or TSH receptor antibodies (TRab).
Hashimoto's can burn out after thyroidectomy if most of the thyroid material is cleared from the thyroid bed. Graves often goes dormant but it doesn't go away after thyroidectomy and can go on to attack other organs, usually the eyes.
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