I had total thyroidectomy in 2015 as I was diagnosed with cancer, I was 26 years old that time. I am taking 125mg Thyroxine per day and 150 during the weekend. Since I had my surgery I haven't visited an endocrinologist, there is an oncologist that monitors me and the GP. The oncologist says every time that everything is good and my hormone levels are fine, but I feel exhausted all the time and emotionally. They believe that this has nothing to do with my thyroidectomy and I should see a psychologist. I don't believe I need that, as I never had issues before.
There are moments that I don't have the energy to do basics things. Waking up is the hardest part, I really struggle every morning. Is there anything you can suggest to do? My diet is balanced and I walk a lot, but it seems it is not enough. Is there anything else I can do? I am 29 and I don't want to feel like this forever.
Thank you,
Angie
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Angel013
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Do you have your latest thyroid test results, if so post them with their reference ranges so we can see if you are optimally medicated. If you don't have them then ask at your surgery for a print out then make a new thread and members will comment.
I had my last blood test on September at the hospital and they didn't give me a copy. I will have new one on March when is my next appointment. I can ask for a copy so I can post them.
I'm sorry to hear you had a total thyroidectomy for thyroid cancer at such a young age. It's a big adjustment for your body and I don't think the doctors have any idea of whaat a big physical impact it has. I'm sure your problems are physical not psychological but you do need a good network of support and the more support the better. The good news is that you will eventually get to a place where things settle down and you'll feel on an even keel and not so tired but it can take time.
Do post your latest results as SeasideSusie suggests as people can give you better suggestions then. You are not on a very big dose of levothyroxine but usually after cancer TSH is kept suppressed. This might make you feel tired but it could also be nutrient levels that need looking into. Have you had vitamin levels tested? When you suddenly lose your thyroid, your body is thrown into instant turmoil. Even though the Oncologist says thyroid hormone is good, it's unlikely to be functioning in the same way that it was before. That's because there is a disconnect between the thyroid hormones and pituitary function once you've had your thyroid removed and replacing with levothyroxine is simply not exactly the same as it was before.
I think in most cases the body does eventually adjust to the changes but you still may lack the active hormone T3 depending on how your body converts FT4 to T3. It would be very helpful to find out what your FT4, FT3 and TSH readings are from your latest blood test. If you post them here, people will give you suggestions.
A change in thyroid hormone status can affect how you respond emotionally. This is because the thyroid hormone affects our executive function. This is the means by which your brain selects what it wants and needs to focus on. Emotions that would normally not bother us because our brain selects them out can become distressingly overwhelming. This is an aspect that doctors do not understand and do not want to deal with. However, when we have sufficient thyroid hormone, this should settle down and not be a problem.
Another thing you may find affected is how your stomach works because thyroid dysfunction and taking levothyroxine orally seems to often affect the balance of stomach acid. This can make it difficult to absorb nutrients from your diet, no matter how good your diet is. So for example, low iron levels may cause tiredness. This is common with young women but may be more pronounced when you are also missing the thyroid gland. If you have had iron levels tested then post here. If not, ask your GP to test ferritin (your iron store), vitamin B12, folate and vitamin D. All of these are important for thyroid hormone to function properly and for us to feel well. For some reason, Oncologists and Endocrinologists don't seem to think these are important but people on this forum will tell you otherwise.
You may find that not all the generic formulations of levothyroxine suit you so make sure your pharmacy only gives you one formulation and does not switch you between different makes. Many people find they are not interchangeable. It took me a long time to find the one that suits me and in the meantime I was very unwell. Keep a note of each box number and make and then if you have any problems you will have a record to check.
You could read this post to get a feeling of how thyroid conditions affect other people.
Thank you so much for the response and the advices. I have to say its really helpful.
When I had my surgery my doctor asked me if I wanted to take part on a trial (IoN trial for the radioactive iodine) I agreed as I wanted to help people after me, so they don’t put themselves in the place I was.
I was thinking also that they will do regular tests so they will give me the right guidelines and dosages. Unfortunately the only thing I hear your tests are normal and thyroid has nothing to do with it. They even said to me that they will reduce the dosage in a year.
I went this morning to my GP and I god some blood results from a test I had in August. I know that is quite old. but maybe it will give an idea. I asked my GP to have another one, but he said that its not necessary as my results are normal.
Here are my results:
Serum Free T4: 31.2 pmol/L (10.00 - 23.00)
HbA1c Levl- IFCC: 34 mM/M (20.00-42.00)
HbA1c Level (DCCT aligned): 5.3% (4.20-6.20)
Serum Folate: 6.9 ug/l (3.10-20.50)
B12: 315 ng/l (187.00 - 883.00)
Ferritin: 46 ug/l (22.00-275.00)
The last few months, as I was feeling that my symptoms don’t get better, I did some research on T3 and I started taking T- convertor, I am taking only for 3 weeks. and I haven’t really notice a difference yet. I said I will give a try for at least 2 months though. Is this good you think?
Recently because I was diagnosed with an autoimmune I changed my diet a lot, I am trying to avoid gluten and lactose (even sugar which is hard). I noticed the difference on my skin which is good, so I am hoping that this will help eventually with my energy.
With a freeT4 like that you are over medicated. On Levothyroxine at least. We need to see your freeT3, too, to see if you're getting enough active hormone. You want freeT4 to be inside the range, or at a push very slightly over.
These vitamin results are really terrible, though! Being ill for so long has trashed your vitamins. Folate, ferritin, and vitamin B12 all desperately need to be raised, and these will be giving you a lot of symptoms and may be preventing your thyroid hormone from working properly. The rule of thumb here is that they should be at least halfway through the range, and yours are all at the bottom.
You've already had SeasideSusie posting in your thread, and she is the best person to ask about vitamins, so I will leave her to explain what needs to be done, as I only know the basics.
I didn't really notice the results until i wrote them, as the gp said they were fine. They are not great after all. In general I am taking vitamins and I was expecting that the results will be better.
SeasideSusie, if you have any advice please let me know.
To improve deficiencies you need to supplement in quite a focused way, using the most bioavailable forms, often at high doses. One of the ways being sick can cause deficiencies is by messing up our stomach acid and digestion so things aren't being absorbed from food, so that can slow things down, too.
I'm sure Seaside Susie will help you. If she doesn't get a chance and you haven't heard from her in a few days, reply to one of my messages and I'll try give you an approximation!
You haven't said what vitamin supplements you are taking but with those nutrient levels I would suggest the following
Serum Folate: 6.9 ug/l (3.10-20.50) - Folate needs to be at least half way through it's range so 12+ with your range. A decent B Complex containing methylfolate will help eg Thorne Basic B.
B12: 315 ng/l (187.00 - 883.00) - should be above 500 as anything below means that deficiencies can begin to appear in the cerebrospinal fluid, according to Sally Pacholok in her book Could It Be B12. Top of range is best and if you have no symptoms of B12 deficiency you could supplement with sublingual B12
Ferritin: 46 ug/l (22.00-275.00) - needs to be at least 70 for thyroid hormone to work (our own or replacement), prefer half way through the range. Eating liver regularly can help raise Ferritin (maximum 200g per week).
It sounds like you are being given the absolute minimum of aftercare
You really need to see those blood tests, because you are almost certainly undermedicated. You can get them straight away by getting a mail order finger prick blood test from Medichecks or BlueHorizon. The ThyroidUK website explains how.
You need TSH, freeT4 and freeT3, these should come in a package and be about £40, Medichecks does a Thyroid Thursday sale so you may find it cheaper.
If you can manage the cost get your vitamins as well, ferritin, folate, vitamin D and vitamin B12, as these are often deficient as a result of being undermedicated, and can give similar symptoms, and stop the hormone replacement from working as well.
I have also had a thyroidectomy for cancer. They tell you it's all going to be completely fine afterwards, but they don't understand thyroids very well.
Not sure about being under-medicated, however taking too much levothyroxine (as I did for many years) can lead to a raft of other physical problems. Getting the balance right is such an individual journey. Very best wishes.
Getting the blood tests is the most important thing, too find out one way or another.
The reason I say the original poster is likely to be undermedicated is because her symptoms suggest under medication, and also doctors are very stingy with Levothyroxine and its very unusual for a patient to get to the point of being over medicated. This is just an educated guess, though, so I don't suggest doing anything about it until we see the blood tests.
If you've been told by a doctor you were taking too much Levo, but haven't confirmed the figures for yourself, I'd be suspicious. It's very common for people to be told they're over medicated and have doses slashed when it isn't true, and leads to a lot of suffering.
To be honest, I was thinking that having an oncologist and a GP will be good at the beginning. But its been 3 year and I haven’t seen an endocrinologist which I find really strange.
The oncologist that supervise the trial I took part will run few test in couple of weeks and I will ask for the new tests.
I am sure if I am under-medicated or overmedicated, simply because I can’t find even 2 doctors that agree with each other.
One says lets increase it, the other no lets decrease it.
The only thing I want is find my balance with my body. I feel that something is wrong, I just can’t find what it is.
It sounds like what you're being told is that getting better on hormone replacement is just a trivial thing. You take the pill, and the expectation is that you'll get better with no hassle.
This is the attitude to it that doctors tend to have, but there are a significant minority of us who do not do well on the very basics.
The first step is to really tune the dose. If you're getting conflicting advice about whether you need to increase or decrease it sounds like they don't know how to interpret the blood tests.
This is why you need to get those figures into your own hands so you can confirm it for yourself.
You are so tentative in your final sentence! I think it can be a very difficult process to come to terms with the fact that doctors don't know much it thyroids and won't offer any help.
I had my TT in 2013, a year of cancer treatment, then spent two years accepting the hormone replacement treatment my doctors were willing to do. But my endocrinologist was pretty clear that she couldn't do anything more to try and help me . I've been self medicating for just over two years, using NDT, which is the third line of thyroid hormone, and I'm slowly starting to get improvement.
If you're taking 125mcg of levothyroxine and 150 at the weekend it sounds like you might be on TEVA?? If so, try a different type of levo and don't mix formulations. Lots of people have had problems with TEVA.
You need comprehensive blood tests. Ensure your oncologist tests for TSH ft4 and ft3 ( where I live only hospital consultants can order ft3) then post the results on here for advice. I suspect that you may not convert t4 (levothyroxine) the inactive pro hormone to t3 the active hormone very well. In health the thyroid produces both t3 and t4. You also need good levels of ferritin, folate, vit b 12, selenium and vit d in order for the body to utilise the levothyroxine properly. It would be worth asking gp to order blood tests for these ( they won’t do selenium levels on the nhs). I had a TT 4 years ago and only felt better after introducing t3 (liothyronine) as well as levothyroxine. Sadly though I have to self treat with t3 as the nhs with drew it.
If you can it can be helpful to get copies of blood results pre surgery if you weren’t having hypothyroid symptoms at that stage as it gives a bench mark for your natural ‘normal ‘ range. Many medics think that if you are in range everything is all right, but if your normal is high in range then you may be undermedicated. Good luck.
When I first started my research on thyroid medicines I came thought T3 and that my body might need it. I suggest it to my GP and he said that he can't prescribe it.
Unfortunately I can't find blood results before my surgery only after. And the results are really similar with the results I posted above. My Vit D 2 years ago was 47nmol/L (70-150), but nobody said to me that I had to take a supplement.
Years ago, the dose after thyroidectomy was 200 - 400mcg thyroxine per day. With a dose in this range the FT3 results would have been good. Please go back to your GP and ask for an FT3 blood test. If this is low, you will be struggling. The doctors now rely on the TSH test and not how you feel. Can you post your blood test results.
I posted some results from August above, but please find them here as well:
Serum Free T4: 31.2 pmol/L (10.00 - 23.00)
TSH: 0.12 mlU/L
HbA1c Levl- IFCC: 34 mM/M (20.00-42.00)
HbA1c Level (DCCT aligned): 5.3% (4.20-6.20)
Serum Folate: 6.9 ug/l (3.10-20.50)
B12: 315 ng/l (187.00 - 883.00)
Ferritin: 46 ug/l (22.00-275.00)
You need to tell your oncologist that you still feel poorly and insist on more help.
At your age I was leading a busy active life and had three young children after a TT for thyroid cancer as a child, this was achieved because my dose of thyroxine was 300 mcg a day. I felt and looked perfectly well.
I am now 62 with none of the problems that doctors believed would happen after a life time on this dosage level.
I firmly believe people are undermedicated today, and am not surprised you are struggling on your dose.
Doctors are happy to tell someone without a thyroid that they have psychological problems and will happily give you antidepressants, but are not happy to increase thyroxine which quickly resolves any emotional problems. How can antidepressants possibly be a better choice than tweaking your thyroxine levels, it is totally illogical!
I would make an appointment with your oncologist as soon as possible and keep going back to see him until this is resolved.
Same boat 17 years ago but was on 150mcg which caused many problems for me as I convert very well. I now take 100mcg and that suits me (with no thyroid gland). 300mcg seems rather a lot, but if it suits you, then it is right for you.
My doctor increased the dosage during weekend only after I insisted. and for a while I have to say it was fine. When I suggested I might need more, they said that he wanted to do the opposite in a year and decrease it. I will push it as much as I can to find a solution as I have a really busy work like and this fatigue is making it hard.
Hi I also had a TT in 2015 before I wasn't on any medication and was fit, happy, and active.
Then I was started on Levo for 8 months it made me ill and very tired. I then joined this site and started to self medicate with NDT. Anyway I am now well and you will be with the good advice on this site.
The first thing to do is to get your bloods tested as stated and post the results with the ranges on here for answers OK? You don't need antidepressants just the proper thyroid medication that works for you. It might take time and patience but at your age it's so important.
Before I was like that I was exercising more and I was really active. Now I don't feel the same.
I thought of the NDT recently, but because I am taking part to a trial I don't want to mess their results. I was thinking to try it after the trial finish in 2 years.
A significant input to their trial is that you feel bloody awful on it, to the point where you feel you cannot continue. Believe me, that is a very important data point. Do not suffer for another 2 years.
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
You need to see an endocrinologist and also get all your vit levels checked, Vit D, B12 and so on. I have no thyroid gland for the same reason and used in the beginning (17 years ago) to take 150 mcg daily which was really too much and I had various problems because of this. I am now on 100mcg daily. You may find you need slightly less as time go by. Energy levels, should improve but don't be fobbed off and get all your vits checked as I said. You probably DO NOT need to see a psychiatrist!!
Angel1013,
I had thyroidectomy in 2016 for cancer and I can relate I was told the same thing your numbers are good you need to see a doctor for your mental health and seek a support group you're just unhappy. I've switched Endocrinologist 3 times because I refuse to except that this is as good as it is going to get and it worked I found a female endocrinologist recently who was at least willing to try something different and for the first time in over a year I stopped gaining weight. If this Endo stops being human I will kick her to the curb just like the others, I refuse to suffer anymore.
My 15 month thyroidectomy battle:
1. Weight gain - 35 pounds that won't budge
2. Severe tendonitis in both feet and ankles (crippling) on going
3. Upper back and shoulder pains (comes and go)
4. Water retention (not as bad now) with med change
5. Migraines (off and on)
6. Depression (doing good right now) with current med change
7. Energy level (still stink)and I base this on my fitness level over a year ago.
I hope you get better soon. The advice here is outstanding!
Thank you so much. I felt so good when I found this blog as it helped me understand a lot of things.
I am so glad you are getting better and I wish you all the best
Hi Angel, If I were given these explanations I would feel like I was being dismissed. And would be very tempted to look elsewhere for a consult/proper care. Just a thought and just my opinion. For me regardless of what a doc might say (ie everything is fine). If I'm not feeling well then everything, in my opinion is NOT fine. The ball is in your court. Hope you get some answers. It's awful to feel chronically tired/ill/etc and no one is looking for other answers. Take care. irina1975
As everyone is saying, you really need your FT3 tested and as for having to wait another 2 years, I think you must have a serious conversation with your doctors. That will be another 2 years lost! Most thyroidectomy patients do best on NDT, but if you take sufficient thyroxine, I.e. 200 -400 mcg that should in trade your FT3. Low doses of thyroxine just don't work. Your B12 cd be higher so may be worth supplementing with methylcobalamin (sublingual nuggets). That may be worth a try.
You are not getting the medication you need, I also had a total thyroid removal in 2005 and struggled for years on T4, finally after realizing that my FT3 was on the floor when ever I felt ill, I started self medicating with T3 and finally felt human again. Endroconologists and GP are living in the dark ages, not only do they not test for Ft4 & Ft3 in the UK but don't seem to have a clue as to how to treat those of us without a thyroid. The thyroid produces T4 which is the pre-hormone and T3 which is the actual hormone your system needs, so if you don't have a thyroid you will need T3. It is just plain common sense! T4 can be converted in the intestines, liver and brain, but many of use have conversion issues and you definetly need to get a full blood test done to see where your FT3 & FT4 levels are, plus B12, ferritin, folate, & D3.
You have a very strong case for further medication as you do not have a thyroid, most GP's think you only need T4. Before a chemical form of T4 was developed the treatment was Armour which is desiccated pigs thyroid which obviously had T4 and T3 in it, so why they think we would be healthy on just one of the necessary components is beyond comprehension when you don't have a thyroid.
Up your dose to 175 and see if it improves things after a month. I had my thyroid removed some 30 years ago and have always suffered with tiredness even though my levels are said to be good! upping the dose has improved things for me as most days I can function without sleeping for 2 hours during the day, but my vertigo is no better and has never improved.
Hi!! I feel your pain. I removed my thyroid is 2006 Cus it was overactive, the worst decision I’ve ever made, I wish I’ve done the radioactive iodine at least I would still have an thyroid. After removing my thyroid problem after problem just kept appearing & the doctors think it’s all in my head. Tell you the truth these specialist in thyroid know shit all, they need more knowledge about the thyroid. Til this day I’m depressed but I guess there’s way worse situations in the world than mine, thank god I have god in my heart.
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