Feeling dreadful but doc says results are fine!

[FlamingoPenguin]

Hi there,

I was diagnosed with underactive thyroid back in July 2020. I was prescribed 25mg levothyroxine which was increased to 50mg after 6 months.

Shortly after starting levothyroxine I started getting stiffness in my neck and shoulders along with pain in my hips and groin - the only way I can describe it is feeling like I'd pulled and strained every muscle in my body, It got to the stage where I was in so much pain that I couldn't raise my arms higher than my waist, couldn't dress, couldn't get in or out of the bath, couldn't roll over in bed and found it almost impossible to stand up from the sitting position. It was excruciating!

I kept getting fobbed off by my GP until I suggested that it might be Polymyalgia (found on Dr google) so doc prescribed 15mg prednisolone - it was a miracle drug and the pain went away in 24 hours and I got my life back......I also got lots of associated side effects with Prednisolone!

Just recently I've been getting lots of what seems like Hypothyroid symptoms - so I've had a medichecks blood test.

They say everything is within range apart from CRP which is high but it's always high - I assume that's from the Inflammation from PMR.

I've copied down my results here, if there's anyone who can offer any insight I'd be really grateful.

I just wanted to get some feedback from you wise owls on here before I go to my GP again and get fobbed off again. I could be wrong but I just feel like it's my thyroid that's out as my symptoms have come on more recently in addition to the side effects from the steroids.

Symptoms I have are: fatigue (tired when I wake in the morning and all day), weight gain, slow movements, frequent ulcers on side of tongue, itchy burning feet at night, itchy armpits, very painful left foot, sometimes wake up choking, dry mouth, sometimes can't swallow, depression, loss of drive, loss of libido, hissing in the ears, general lethargy and just a general feeling of can't be arsed to do anything which is really not like me!

Results:

CRP - 7.81 (0-3)

Ferratin - 100 (30-264)

Vit B12 active - 150 (37.5-188)

Vit D - 63 (50-250)

TSH - 2.53 (0.27-4.2)

Free T3 - 4.2 (3.1-6.8)

Free T4 - 14.4 (12-22)

Thyroglobulin antibodies - 26.2 (0-115)

Thyroid Peroxidase antibodies - 19.5 (0-34)

I am probably 3 stone heavier now from when I started levo - mainly due to steroids but I had been gaining weight steadily before I was diagnosed. I've just turned 58 and probably weigh at least 4 and a half stone more than I did at 50.

I also take 50mg of Prozac daily - as doc thinks I'm depressed.

I hope someone can shed some light on my results vs my symptoms.

xx

[Jazzw]

It might not be the whole answer but 50mcg levothyroxine is rarely a full replacement dose, and looking at your results, you are undermedicated. I would suggest you need at least another 25mcg daily—it might even be more. So that’s the first thing and very likely to be the thing that’s causing many of your symptoms. Doctors are obsessed with keeping blood test results in range instead of optimal. For most of us with hypothyroidism, optimal TSH tends to be a result below 1.0.

Your Vit D could do with being higher—if you aren’t already supplementing I would suggest you do.

[GlowCoach Administrator]

Its sounding like your GPs a being very conservative with your thyroid treatment.

Dose raises should be followed by a blood test to check levels after 6-8 weeks and then dose raised until TSH is at or just below 1 and symptoms are better.

50mcgs Levo is just a starting dose for otherwise healthy people.

Free T4 (fT4) 14.4 pmol/L (12 - 22) 24.0%

Free T3 (fT3) 4.2 pmol/L (3.1 - 6.8) 29.7%

Both FT4 & FT3 are below 50% of range and your TSH is above 2.

You are going to have to take charge of this and lead your treatment by being proactive asking for dose raises and getting blood tests booked. Post test results here when you have them for members to comment.

Discuss with your GP the NICE guidelines where it does suggest a patient can be started on a dose based on a calculation with their weight.

1.6 x weight in kilos = somewhere around the dose that you require.

nice.org.uk/guidance/ng145

Yo need to insist on a dose increase. Find a GP at your practice who is more open minded and approachable.

Vit D is on the low side. We need all vitamins at OPTIMAL levels for thyroid hormone to work well.

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...

B12 is good.

No result for folate.

Ferritin looks good but your CRP is slightly raised and inflammation can falsly raise ferritin.

When you have more thyroid hormone inside and vitamins more optimal you it will get rid of any psychological symptoms that your GP is imagining!

[Hidden]

just to say that I have symptoms on thyroid

meds very similar to yours and my doctor suspect I have adrenal issues. I’m no expert but just something to consider….

[DippyDame]

You are undermedicated ....both FT4 and FT3 far too low.

Symptoms underline this....it's not depression.

Aim for result roughly approaching 75% through reference range

Calculator...

thyroid.dopiaza.org/?utm_so...

Vit D should be 100 - 150

High CRP suggests inflammation....pain?

50mcg levo is only a starter dose....raise to 75mcg and test again in 6 weeks....repeat

Your GP has little idea about thyroid disease...

Correct medication should get you back on track

[Goldenbeads]

hi you are experiencing so many of my symptoms !

Do you still have those pains? I have very painful left foot, knee , spine, hips I was bed bound with this for a month. I had what I thought reactive arthritis but now rheumatologist has diagnosed axial spondyloarthritis also an autoimmune condition. Often people have the gene HLA-B27. I am positive . Also fatigue is a big thing..

I am same thyroid levels as higher dose of thyroxine gave me palpitations. But I feel like you so being checked. I am on 25mcg a day as had to come off higher dose. I think my arthritis flare made all go haywire recently. Dry mouth etc can be Sjogrens ?

I hope you get some answers but maybe ask for rheumatologist if still pain and high inflammation. Good luck . 🤞 I am hoping my treatment for the arthritis will help. I am post menopause at 57 so think lots of my problems started with menopause!

[Kowbie]

oh I do feel for you , these drs make me so mad I think you are very under medicated I hope you can get him to see sense ,big hug go in guns blazing

[Polly8855]

the symptoms you describe are exactly the symptoms I get when having a hashimoto’s flare up Can last a few days and then usually settles down for a while

[catherine1712]

whenever i have severe episodes some twice a year, I get prednisolone and I find this treatment helps me with the pain and the inflammation.