Follow up -Full thyroidectomy after subtotal th... - Thyroid UK

Thyroid UK
101,188 members115,409 posts

Follow up -Full thyroidectomy after subtotal thyroidectomy

Has anyone ever sought out a total thyroidectomy surgery years after a subtotal tyroidtectomy for goiter and multinodular Hashimoto’s autoimmune thyroiditis? I had a subtotal thyroidectomy at age 19. I’m now 34. For the last 8-10 years my thyroid levels have been uncontrollable. Thyroid scans show that in the last two years the remainder of my thyroid has shrunk by 33%. My husband and I have been trying for a year and a half to conceived. We have used all our savings for fertility treatments. I am beyond exhausted and frustrated in the daily interference in my life. Any advice or input would be great. I am a professor and have done extensive research but it hasn’t really indicated why my current endo won’t do the follow up surgery. There is very low risk and the two concerns may be Laryngeal nerve damage (less than 1% risk) and parathyroid damage (less than .7%).

26 Replies
oldestnewest

For the last 8-10 years my thyroid levels have been uncontrollable.

How have you been trying to control them?

Why did you have the partial thyroidectomy, exactly?

I think people need a bit more detail before being able to help you. Do you have any lab test results and ranges to share? :)

1 like
Reply

Yes. My last test was 3.0, which is remarkable for me. I’m usually around 8 or drop to .002 or .003. It is a pendulum that swings and quickly. Sometimes it jumps by 5 or 6 in four weeks. My surgery was because my goiter was so large that I was Having difficulty breathing, sleeping, and swallowing. I also had multiple nodules in both lobes. My isthmus is now almost non existent and both lobes are small. We tried Levothyroxine prior to the surgery for a year with no success. I have been on levoxyl, synthroid, levothyroxine, armory thyroid and Cytomel at different points. We usually try the meds for 6-8 months before realizing it doesn’t work. I’ve been on levels of synthroid from 75-150. Due to the inconsistency, my fertility doctor will not proceed with treatments until my Endocronologist puts it in writing that it is safe.

Reply

So, your doctors only test TSH, and therefore have been dosing by the TSH. So, that's why you haven't been able to stabilise. It is totally wrong to dose by the TSH? You need at least the FT4 tested, although the most important number is the FT3 - especially if you're taking Armour or Cytomel.

1 like
Reply

I appreciate that. However, my levels for free T3 and free T4 were within the normal range on my last blood test. I’m so frustrated. My husband and I are at wit’s end trying to get me to feel more “normal”. I see My Endocrinologist again next week. I’m pushing the issue when we see him. I truly believe the final option is to do a second surgery to remove what is left and get a baseline. Then we can assess the situation and get the correct medication accurate.

Reply

Just being in the 'normal' range doesn't mean they are normal for you. It depends where the result falls in the range. But, I can't see how having the rest of your thyroid removed will help if your endo doesn't know the basics of treating hypothyroidism. Your base-line would be zero without a thyroid - probably is now, if you have had half of it removed and have Hashi's. But, knowing that your base-line is zero, or anything else, does not help in getting the correct dose. You cannot guess in advance how much you are eventually going to need. And, if you try and dose by the TSH, you will continue to yo-yo.

Do you know how well you convert?

1 like
Reply

Do you have recent blood test results and ranges you can add

Presumably you are on Levothyroxine?

With Hashimoto's low vitamin levels are EXTREMELY common. Have these been tested?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

Are you on strictly gluten free diet or have you tried it?

With Hashimoto's dose of Levothyroxine needs to be high enough to switch your own thyroid off to stop levels yoyoing all the time

1 like
Reply

We have done gluten free, we tried other elimination diets for dairy and reducing sugar. I am Vitamin D deficient, as well as B. I’m on a megadose of Vitamin D from my rheumatologist because I also have fibromyalgia. She tested my vitamins last month. I am also anemic. I am taking Vitamin B, supplements for iron, Vitamin D and my ferritin was acceptable. I’m in the US, so many of those suggestions are not available to self diagnose or treat.

Reply

Why can't you self treat in the US? Surely you can buy meds online same as we can in Europe? I buy my vit D from the US, for example

Reply

No way! It’s illegal. You need a prescription from a doctor and approval from insurance. Many people go buy meds in Canada to save money. It’s really risky. Prohibited by federal law.

It is even illegal to get medicine for your pet without a legitimate prescription

deadiversion.usdoj.gov/cons...

Reply

Ah, but what counts as a controlled substance? For example, it is illegal to import DHEA to the UK even for your own use, but you can buy it in the US as a supplement. Thai desiccated thyroid is considered a supplement there, or there's always Thyrogold.

Here in Europe we just assume that all Usians go to Mexico or Canada to get what they want (evidently not true). Surely there's a better choice of doctor when you are paying for it?

Reply

Yes. Thank you. I’ll see my endo Thursday and see where we get. I appreciate your help.

Reply

Also, my thyroid antibodies were around 160 last month. Yes, I get my labs done in am without taking meds or eating. We have tried EVERYTHING.

I am on prescription lotions for dry skin. I experience moderate to severe hair loss, migraines, cystic acne when my TSH is below 1.0, my nails are brittles and split. I have insomnia and chronic fatigue. I have been prescribed Sumitriptan for migraines, as well as getting massages to release tension. I am on Trazadone for sleep. I take Venlafaxine for severe depression and anxiety. My periods are pretty regular but my ovulation is not exactly consistent. I experience a puffy face, pale skin, and aches many days. I am almost always constipated, so I started using Smooth move tea. I have gained about 17 pounds. Prior to this, about 10 years ago, I was energetic, happy, ran a lot- including half marathons and marathons. I only needed my TSH tested annually. Now I struggle to complete 3 miles. I am sluggish and experience brain fog. I’m a college professor and this can be incredibly frustrating.

At age 34, I was also just diagnosed with arthritis in my lower back and hips.

I just sent MediChecks an email to see if I can utilize their service, despite living in the U.S.

Reply

Dear Dog Lover,

I am not in the same position as you - I just had a TT 12 weeks ago for huge multinodular goitre and Graves. But after reading your post here, I can’t even imagine what you are going through. No wonder you are at the end of your rope. I am so sorry to hear this.

First a question - why is there resistance from your MD to removing the rest of your thyroid? I ask this not to encourage you to remove it, but trying to understand his/her rationale. Is it worth getting a second opinion about this?

You’ve provided lots of detail on your condition - but it’s unclear what the most recent dosing is of what meds you were on for the thyroid. Greygoose is correct in that if the TSH is only measure being used it’s no wonder you can’t get properly controlled.

I can tell you first hand as one who has no thyroid that it is not any easier to find proper dosing without one - I have spoken to many who have had TT and the average time it takes to get the right dose is about a year.

I am also a university prof - in Canada - and did extensive research before my surgery. I had a superb surgeon and had a great surgical result - no vocal cord or parathyroid damage at all.

That said, adjustment to life without a thyroid is very hard. I am still nowhere close to the right dose of medication , and all my stats are being measured on a regular basis. And many other weird and not pleasant things happen as well when you have no thyroid at all - I have uncontrollable crying for no reason, and have periodic breakout of gigantic hives in uncomfortable places every time my medication is changed.

Even with no vocal cord damage, your voice will not be fully usable for some time - after 12 weeks I still run out of voice after a few hours of regular use. I am not able to go back to teaching yet and may not be ready in September either because of the difficulty in adjusting my meds.

I had no choice about the removal of my thyroid - it was a necessary operation for me and an urgent one as I was at risk of thyroid storm. In many ways, I do feel better now - but in others , I will never be the same.

I know this may not answer your question exactly. But since you are asking about a full TT - I thought my experience might give you some perspective in that neither choice - keeping it or taking it out - and having an autoimmune disease - is not really easy.

I wish you well and send you positive thoughts as you go through what I can tell is a hellish time for you. I hope this has been some help for you. All the best.

2 likes
Reply

Thank you so much for your input. I’m contemplating getting a second opinion at a premier hospital. I have had four Endocrinologists in 8-9 years. Many believe that I will “always feel this way.” I find this unacceptable and believe I need to continue my search. My current endo is reluctant because he said it just won’t make a difference. I’m not yet convinced. Please wish me luck as I visit him in Baltimore- a three hour drive from Pennsylvania - next Thursday-5-16.

1 like
Reply

I agree with Greekshick. Do not remove it unless it’s absolutely necessary. It’s not easy to find a right dose and it’s better to keep your organ than relying on the pill. Good luck!

1 like
Reply

I have almost nothing left of the organ since my subtotal thyroidectomy in 2005. I’ve been relying on replacement hormones since then. It’s been 15 years. What is left of my thyroid doesn’t function properly.

Reply

I absolutely agree with you! I had made me removed 4 months ago and it has been terrible experience. I hope you feel better soon.

1 like
Reply

Thanks for your good wishes - I really appreciate that you took the time to wish me well.

I really am doing better and getting closer to right dose. Voice is getting better every day too - so I am making steady progress. Under the circumstances I faced, I consider myself very lucky and am hopeful I will get to where I need to go - as I have a good endo who is open and helpful. He seems to feel I will get back and be well - so I have decided to keep faith with that 🙏🏻🙏🏻.

I have also revised my timetable and now am looking toward the 1 year horizon to get where I need to go. I think my expectations were not very realistic now that I have spoken to others, including MDs and TT patients. This forum has helped too.

I also have to say that I do feel better in many ways. Graves is an awful disease - my goiter became so huge in one months time that it was crushing my vocal cords and windpipe. I feel much better with that issue resolved.

Do I wish I still had my thyroid? You bet I do - every day. And as weird as it sounds, I grieve its loss. But it wasn’t in the cards for me.

Decisions about thyroid removal are very personal - and tough to make.

I am not in a position to advise Dog Lover whether it’s a good idea or not to remove her thyroid because I know very little about Hashis and how those antibodies work after TT - plus I’m not a doctor - this is an area I can’t speak to.

Her case is one where I think good medical advice and a solid second opinion are essential for her to make an informed decision either way.

I’m so very sorry to hear you are not doing well and are having such a terrible time. This experience is very rough and I understand all too well how you feel. Sending you best wishes and positive thoughts that you feel better soon.

1 like
Reply

Thank you very much for your kind words. Yes, everyone’s experience is different. I was advised to remove mine due to suspicious biopsy only, which I never thought was good enough reason, and I turned out to be right. My thyroid was ok, so I am going through this for nothing,because docs did whatever was easier for them. I deeply regret my decision, and that is why I want people to be absolutely sure it’s the right thing to do, as nothing can replace your own organ( assuming it works properly). I am sure you will get better, since you have a good and thoughtful endo. Take care and all the best!!!

1 like
Reply

Presumably you are on Levothyroxine (T4) only?

Do you have your recent results to add?

TSH is completely unreliable with Hashimoto's. We need FT3 and FT4 regularly tested.

Conversion of FT4 to FT3 can be very poor with Hashimoto's

Fibromyalgia is often linked to low FT3

Many patients need the addition of T3 as small dose 2-3 times per day

Your low vitamin levels show your gut is affected. Often due to low stomach acid. So this suggests you are not adequately treated

Here in the UK we have recently been able to access DNA testing. Something you may be able to get in US?

DIO2 gene test

thyroiduk.org.uk/tuk/treatm...

Wider testing

bluehorizonmedicals.co.uk/d...

Good film showing gut connection

drbradshook.com/understandi...

In the US you have many of the leading Hashimoto's medics

Isabella Went

chriskresser.com

drknews.com

amymyersmd.com

holtorfmed.com

restartmed.com/about/

Hypothyroid mom

Etc etc

2 likes
Reply
2 likes
Reply

Wow! Your story almost mirrors mine. I am also in the U.S. I had a partial a year ago and my husband and I wish we would have pushed for a total but we trusted our Dr. Because like you say you never have a base line. They are always waiting to see what your other half will do and for me, mine keeps shrinking. I also have Hashimoto's and I see a specialist for rheumatoid arthritis and fibromyalgia next month because my last endo. Said my blood work indicated that. The joint and body aches are unreal some days. I take trazodone at night to sleep and now recently starting taking cbd oil which seems to help. I take, B12, D3, Iron, magnesium, melatonin, iron, zinc and selenium for sleep, vitamin deficiencies and to help my Thyroid plus biotin and evening primrose oil for hair loss. My dr just started me on Qsymia for weight loss because I have put on 70 pounds in the last last 2 years with no changes in my diet or exercise during the 1st 50 pounds and I too used to be very active running 3-5 days a week. This is all on top of my NP Thyroid I take daily which of all the thyroid meds I've tried I like the best. I'm continually trying to be gluten free, I've changed all my soaps, makeup, cleaning supplies and body care to all natural....I'm just trying to get my life back. My husband and I have never wanted kids, we travel 100% for work and enjoy it so i know this has to be extra hard for you on top of everything else. I pray you get some relief and a dr that can help.

1 like
Reply

Oh my! Imagine how many of us there are out there, suffering like this. I’m glad they have given you something for the weight fluctuations. It kills your confidence. Luckily, my Rheumatologist prescribed Plaquenil, which has resulted in dropping a few pounds. I felt like we were finally in good hands at Johns Hopkins, but I’m beginning to wonder after a year of being unable to conceive or even try due to my levels. I also have started CBD oil. I applied for a medical marijuana card, as marijuana is only for medical purposes in Pennsylvania. It’s so frustrating. I appreciate your input so much. Where are you located?

Reply

I travel all over. I'm originally from Wisconsin, right now I'm in Wyoming. I had my surgery down in Houston and now my new Endocrinologist is in Denver which has been part of my struggle moving around so much. I finally just decided that I am going to have to travel for my appointments regardless so I might as well just pick a good dr.

Reply

Are you happy with your current endo?

Reply

Yes, I really like her

Reply

You may also like...