Complete thyroidectomy & meds

[cmm7766]

Hello everyone !

I had a complete thyroidectomy in August. Initially, I had been taking the generic Levothyroxine. I immediately had horrible symptoms of crushing depression and extreme fatigue. My doctor boosted me up to 125 mg and there was no difference. I looked online and read that some people fare better with the brand Synthroid. My doctor gave me some samples, and I must say those symptoms vanished immediately; however, now, of course, I have new symptoms. My body aches from head to toe, sometimes all day and sometimes I feel OK in the morning and don’t experience the pain until mid-day. It doesn’t seem to matter how much activity was involved in my day. Has anyone else had this experience? If so, does it ever go away? A couple of days after taking the Synthroid brand, the pain was soleley in my neck, radiating down my arm to my hands. Initially, I took prednisone & that cured it. Yay! Now I am left with general body aches. I come up negative for Covid and keep up with all my vaccinations. I had a blood panel run yesterday and everything was 100% normal. I am taking 125 mgs of the Synthroid and my doctor and I agree that if we lower it, I could get back into the depression and sleepiness, so the 125 mg seems to work well for me. I guess what I’m asking is, Does anyone know if Synthroid can cause pain in the body? And if so, does it ever subside? I can’t take NSAIDs and Tylenol barely touches the pain. I would love to take painkillers but, I can’t be on those forever. Please help with any advice that you can because I’m desperate! Thank you so much, Christa

[SlowDragon Administrator]

Welcome to the forum

Are you based in U.K. or USA?

Bloods should be retested 6-8 weeks after being on constant unchanging dose and brand levothyroxine

Do you have any results yet you can add

Plus ESSENTIAL to test vitamin D, folate, B12 and ferritin levels

Were these tested BEFORE thyroidectomy

Always test thyroid levels early morning and last dose levothyroxine 24 hours before test

[cmm7766 in reply to SlowDragon]

Hi! I am in the US. I have had 3 blood tests done to date. I don’t have numbers on hand. The doctor said that my vitamin D looked good. He also said that my thyroid levels looked a bit high, but if I’m feeling good that we could keep the milligrams where they are. I don’t take folate, but I take Super B vitamins daily (all B vitamins represented). I don’t recall him saying anything about the B12 but I’m sure he would have if it were low. I don’t take folate or ferritin, but I will also ask the doctor about it. I have a serious heart condition so I will have to be sure that it’s OK to supplement. I’m not sure if those markers were used in the blood work that was done before the thyroidectomy. I will definitely keep your advice in mind regarding the timing of the blood work. I have an appointment to see the doctor on November 29th and I will ask him these questions. I will also ask for my blood lab results next time around. American Dr’s don’t like to be questioned and people online tend to be a lot more forthcoming with information. Especially those who are experiencing the problems. Any further feedback that you may have is always welcome.

[SlowDragon Administrator in reply to cmm7766]

Come back with results and ranges when you get copies

They are your results, you’re entitled to copies

Don’t ever supplement iron unless results show you need it

ALWAYS get actual results and ranges as tests are done

[jrbarnes]

Hi there, I had a partial thyroidectomy years ago and the rest of my gland no longer functions so I'm 100% reliant upon Levothyroxine. I wasted 10 years of my life by going to endocrinologists and regular Drs. They will only pump you full of Levothyroxine and when you're still in pain and suffering will diagnose you with fibromyalgia instead of realizing that you need a different kind of therapy. I'm also in the US and see a registered nurse who runs a functional medicine practice. I would highly suggest you seek out a place that will pay more attention to your symptoms and be open to prescribing Levothyroxine and Liothyronine together. Seek out a functional medicine place or even an obgyn that mentions on their website that they balance hormones and mentions T3. Any Dr who has a website that references T3. Endocrinologists are the biggest lazy bums in the medical field so don't bother with them and family drs usually only follow the standard protocols by only testing the TSH and maybe FT4. I'm going to suggest to you some blogs to read up on all this stuff. The first one is Dr Westin Childs restartmed .com and I also like Paul Robinsons blog. Their blogs are useful in helping to understand why you're not feeling well on Levothyroxine. You need the full range of tests like TSH, FT4, FT3 and Total T4 and Total T3. In the US it's easy to get all those done. You can even order your own labs, which I do, on Ultalabs, unless you're in a state that doesn't allow. Order the tests online and go to the testing center. My results usually come back in a day. If you want to get better on thyroid meds then you can't leave it in the Drs hands. It's just the sad reality of it and why there's so many people on this forum looking for help. I had all those horrible symptoms you have and was even put on steroids for the pain but those make your thyroid function worse. I now take Levothyroxine and Liothyronine. Synthroid(most expenisve) is basically a name brand that gets pushed by Drs but I prefer Levoxyl over it. There's also another name brand called Unthroid, which is manufactured in the US and has a good reputation. Stay away from the generics because they switch them often at the pharmacy. The generics are also absorbed better than the name brands so you'll notice a drop in your levels if you switch from generics to the name brands. The best of the best is Tirosint which comes in liquid and capsule form. These are nearly if not 100% absorbed unlike the tablet form of Synthroid you're taking which is maybe like 80% absorbed. The liquid and capsule barely has any fillers so people like that. Tirosint has a program on their website and you can get them discounted. Synthroid puts a bunch of crap in their pills that people can have reactions to. I'm telling you everything I wish I'd known 10 years ago! Good luck

[Batty1 in reply to jrbarnes]

I take generic levo and I get the same manufacture every time because I told my pharmacist do not substitute this manufacture and never had a problem.

I agree that people without a thyroid should be given both T4 and T3 ..

[jrbarnes in reply to Batty1]

Personally I like the generics better. My Dr tried to switch me to name brands a few time and after a few days I couldn't function. I think the generics have an advantage over the name brands. If name brands change their formula they have to face a lot of complaints however companies that manufacture generics are usually nameless and they can make their tablets better absorbed. I was reading something about a micronization process that aids in better absorption and bioavailability in generics. I have a few small town pharmacies near me and they'd probably be able to order me the same generic but stores like Walmart are always changing. They carried the Sandoz generic and swapped it for Euthyrox last year and so many people complained that they had to bring in another generic.

[Audley1013 in reply to jrbarnes]

Amen on the Tirosint! No fillers to react to and better absorbtion! I find with my insurance its reasonable at the Walmart pharmacy. Just over $80.00 for a 90 day supply.

[jrbarnes in reply to Audley1013]

Tiosint capsules has a copay savings card on it's website for people who have insurance and you can get a 3-month supply for as little as $50. Tirosint-Sol has a co-pay savings card and you can get a 3 month supply as little as $0 per month. I don't know why the liquid solution is cheaper than the capsules perhaps it's because there's a generic version on the market of the liquid solution. For those who don't have insurance they have a cash out of pocket option as well. I think the liquid and capsules is the best way to treat because you don't have to worry about absorption. I'm sick of these companies with their tablet versions that have poor bioavailability and claim that you're getting X amount of hormone.

[Litatamon]

I have a had a total thryoidectomy & was on Synthroid. And yes had body aches that were random, random or I was much too lazy to document and solve the puzzle.

I just got off Synthroid recently & am on NDT. And have noticed a lack of aching areas in my body.

[cmm7766 in reply to Litatamon]

Hi there, thanks for your feedback. What is NDT?

[Litatamon in reply to cmm7766]

NDT is Natural Dessicated Thyroid, another option for medication.

[debjs]

Have you had your calcium levels checked? I had a thyroidectomy 11 years ago & have had numerous problems. My muscles become painful & stiff when my calcium levels start to drop, particularly my neck & jaw. I need slightly higher levels which I have read can happen after thyroidectomy. It took a long time to find the right level for me.

[cmm7766 in reply to debjs]

They said my calcium looked ok, but I do have some supplements here. Maybe I’ll give them a try just to see if it makes as difference.

[debjs in reply to cmm7766]

As with thyroid levels being told calcium levels are OK is not really enough & OK seems to vary between Drs. It might be worth finding out what they actually are & have you had your parathyroid levels checked as again levels needed seem to differ between people.Tends to depend on how good your dr is.

[Batty1]

Some Synthyroid pills contain (Acacia) which is pure poison.

[helvella in reply to Batty1]

Just to clarify, ALL AbbVie Synthroid tablets contain ACACIA (UNII: 5C5403N26O).

dailymed.nlm.nih.gov/dailym...

As well as several other makes, such as (in the UK):

UK Levothyroxine Matrix

[Batty1 in reply to helvella]

I wonder if all the post from people who take Teva and have a horrible experience are actually having and allergic reaction to the Acacia in it …. Really wish they would stop using this garbage.

[helvella in reply to Batty1]

Odd how many say they want and do best on Mercury Pharma (which also contains acacia)?

[Batty1 in reply to helvella]

I don’t know it’s strange I know for me personally Acacia was poison and it really wasn’t something that caused me grief as soon as I started taking it it actually took months maybe I needed a (build up) in my system to start having problems.

[cmm7766]

Thank you, everyone, for all of your kind and informative responses. I must admit that initially I was feeling so unwell that I was overwhelmed by all of the information and put it on the back burner. I have my share of other medical conditions which I’ve had to educate myself on, so to educate myself on yet another was a pretty overwhelming thought. Since I wrote my initial request for advice, I’ve switched medications twice. I started on Levothyroxine, switched to The brand Synthroid, and this morning began my first dose of Armour. I recall someone specifically mentioning this medication in their reply to me. Odd, though, I cannot find that reply. My doctor has also mentioned that he has a few patients that insist on taking Armour because it’s natural. Has anyone else taken it and had good luck with it? Has anyone had negative results with it? I still haven’t posted my bloodwork results here but I do have them and will get to that today.