Thyroid test results appear ok but I still feel unwell, any advice please

[JaneHo]

Following left thyroid lobectomy to remove benign tumour, recent thyroid test results are TSH - 1.29 (.035 - 4.5), T4 -14 (10 - 25), T3 - 5.8 no range provided, I have been told no meds necessary. However I am still very tired (problems with sleeping) I awake most nights about 2am to 5am, shake a lot (inner tremble especially when trying to sleep or on wakening), itchy skin, eye bags, fluid retention in ankles, spots, eye site deteriorating, memory fog, anxiety, I have become very reclusive of late. Right rib and back/shoulder blade pain worse during the night (feel like I am being stabbed), excessive burping, heartburn and finally headaches. Any advice where I should explore next as I originally thought it would be thyroid related but have been told not, so any thoughts anybody? would be greatly appreciated as at a loss where to go next. I have high blood pressure been on meds for last 2 years. 49 year old female.

[Clutter]

Have your ferritin, vitD, B12 and folate been checked? Nitrous oxide in general anaesthetic can cause low B12 and the others are often deficient or low in hypoT patients causing fatigue, low mood, breathlessness, muscle weakness and bone/joint pain. Getting vits and minerals high in range can make a huge improvement in your well being. make sure to ask for results with lab ref ranges.

If vitamins and minerals are high in range I suspect the problem may be your thyroid despite your TFT being in range. Your FT4 is very low in range although your FT3 looks as if it is good in most ranges at 5.8.

Ask for another TFT in 6 weeks if your symptoms haven't improved. Some people don't feel well unless their TSH is suppressed or below 1. Your GP should then prescribe a trial period of Levothyroxine or drill down to see what is causing your symptoms and illness. Being told it is not thyroid related is not a diagnosis. You need to know what it is.

I hope you feel better soon.

[JaneHo in reply to Clutter]

Thanks for the reply I have had extensive blood tests but nothing for the 4 you mention so will go back to the doc and request them. I thought it was strange when the endocrinologist told me I have no thyroid issues but to go and get another complete thyroid panel check in 2 months made me feel they are just waiting for my thyroid to go wrong but I will do this also, thanks again.

[Clutter in reply to JaneHo]

I get so cross when they say one has no thyroid issues when symptoms are there and getting worse or say the symptoms are not thyroid related. What they mean is that your bloods are within a certain range and that's good enough for them, buzz off and annoy someone else. It really isn't good enough.

My surgeon, prior to hemi-lobectomy, doubted many of my symptoms were thyroid related. They were classic spiralling hyper and hypo Hashimoto's symptoms. I didn't have meds until after completion thyroidectomy 3 months later. I honesty think I needed them though.

Mention your swollen ankles to your GP. I know there are concerns about pitting oedema although I don't know why or what it looks like.

[JaneHo in reply to Clutter]

Hi Clutter

Finally got appointment for more blood tests, I asked for the 4 you recommended my doc said she would test me for ones she thought and then if any issues she would consider the 4 I asked for?!?! the long and short of it was she tested my total blood count, liver function and blood sugar levels, she has advised possible Diabetes result of blood sugar/glucose test was 7.8 (3.5 - 5.7) and she wants another test before she will diagnose, which I have booked for Monday. Could all my symptoms be Diabetes and not thyroid at all? and should I continue to pursue Thyroid tests. Any info gratefully received.

thanks Janeho

[Clutter in reply to JaneHo]

It's possible, Jane and equally possible to have both. I'd still push for the vitamin tests too.

[Julips]

Hello - New on here, joined today as I wanted to let ou know that Im in a similar position as you.

I had a left thyroid Lobectomy last September for benign tumour (thankfully!) Felt amazing for about 2 months after then got flu and havent felt the same since, The tiredness returns periodically, there are days where I feel normal again but they are few and faw between.

Bloods have all come back within range (although Im told almost on the threshold of low whatever that means)

I too have right collarbone rib and back pain (chiroprator does help with this and it was smetihng I had before the lobectomy) and more recently neck and ear pain. Im currently on ear spray, but not helped much, so back to doctors this Friday where I will ask for bloods to be taken again to check thyroid as Im convinced my general unwellness is down to low thyroid levels. Could be just one of those things....I dont know.

I do know that when I sleep on my right side the back pain increases, a few nights on the opposite side of the bed actually reduces the pain almost completely. Im thinking it coudl be calcium related...I dont know!! Feeling low and depressed and not so interested in the fun things in life, its an effort to say the least.So new to all of this.

Anyway, just wanted to say I hear you and will take look at your posts, will post back on here if I get anything else coming through.

[JaneHo in reply to Julips]

thanks for the reply, your rib pain sounds very similar I too have a problem sleeping on my right side and if I manage to sleep on the left it goes away, strange, I also had this for some time before my operation, I have been told to go to my doc for a referral for a gall bladder scan, could this be related to thyroid? I also have no interested in the fun things, it does get me down, I feel very introvert which is odd for me but no answers so far, I will keep looking into it, hope you feel better soon.

[Clutter in reply to Julips]

Welcome, Julips.

I'm sorry you're not feeling well yet. It's a painfully slow business getting medication optimised. Please look at my first reply to Jane where I suggest vitamin and mineral testing. If you suspect calcium issues you ought to request a test for that too.

I hope you feel better soon.

[Julips in reply to Clutter]

Thankyou Clutter. I went to the docs yesterday and he has sent me off for a full range of bloods to be done. Will ask for a copy of the results when they come back. Going Monday to get them done.

Im feeling a bt better today. Im wondering if my period cycle has anything to do with it. I feel totally awful on the lead up and usually throughout. Im on a 24 day cycle too which means every three weeks! So I oretty much get 1 week where I have the chance to feel normal before it starts again!!

[Clutter in reply to Julips]

If folate is being tested don't eat and drink until after your blood test.

[Julips]

JaneHo - So sorry for crashing your question! How are you feeling now? Im waiting for blood results...will do another questoin when I have the results.

[JaneHo in reply to Julips]

Hi Julips

No worries about crashing my question..........Nothing has changed for me still have all the same symptoms, increased fatigue if anything as back to work now, managing to struggle on, latest test have revealed I may be type 2 diabetic, I need another test to confirm, so now wondering if all my symptoms relate to the Diabetes or if there is any cross over with Thyroid, your thought are appreciated. Hope you are feeling better? I will look for your results Janeho.

[sunshinedaff]

you do not mention what medication your on for HBP look at the side effects closely Fluid intake ? Sounds very much what I am experiencing and I have all the same symptoms Do you or have or had any infection lately or recurring ie Streptococci or Epstein Barr or CFS are you on any other medication ? go onto DR Sahrah Myhill site and have a good read Have you had salvia test or Adrenal test try homoepathy but I would check your medication would not rule out thyroid how high is the HBP also try meditation Tai Chi and get Medium Medical Anthony Williams book can read before buy Amazon