The Results are in!! Persistant symptoms inc: Really tight muscles and subsequently sore tendons that don't heal...Hairloss, headaches etc..

[Gilbo72]

Hi I am on 112mg of Levothyroxine a day. I have (self-diagnosed) Hashimotos and a GP who is a bit of an a**se. I have been ill since 2009. I was initially trialled on 50, then 100mcg of Levo by a very nice GP, the result was almost back to myself. This only lasted for about 6 months as I then moved and had a new GP who refused to entertain I had a thyroid problem and sent me down the route of ME CFS for several years. At this point I had flue ache all the time, and an inability to exert myself. (Would either be really ill for weeks after or actually collapse). My hair fell out and my fingernails came off their beds. I had a lot of fluid retention, felt really low, put on 1.5 stones, and had a scalloped flabby grey tongue. (Nice). This non treatment lasted for serval years until the ME consultant suggested I retrial-ed Levo and 6 months of B12 injections about 5 years ago.

Since then it has been a bit of a fight, remaining on Levo. I feel best when my TSH is suppressed and FT4 over range, but still have annoying persistant symptoms. But I have been doing really well. I got back to working full time, (+2 kids), studying and running 3 times a week. ( with several 10k muddy obstacle runs thrown in for good fun!)

Over the last 8 months I noticed that I was starting to get ankle problems from the running, first it was painful tendons, like tendonitis that wouldn’t heal. Then my muscles in my legs started to feel really really tight and painful. No amount of hot baths, massages, tiger balm etc helped. It got worse and then I realised it wasn’t a dodgy gait thing, my elbows hurt, the muscles in my back and neck were also really tight. To the point where I cut back on the running and now haven’t run for several months. Visted physio who suggested I was slightly hypermobile and it could well be thyroid related…, and my hair started to fall out in handfulls again.

So what with the tight muscles, hurty tendons and hairloss, I also had headaches, weird ‘fizzy’ feeling in my head/mouth, insomnia started to creep back. I thought it was about time I privately tested.

I have finally got my private test results back, and stupidly (doh) managed to muck up my Thyroid results. (I thought I had been so careful, but working back it looks like I left 48 hrs from my last dose rather than 24hrs...) So for info, I expected my TSH to be much lower and my FreeT4 over range. Previous thyroid bloods over time I have listed below just for reference to compare with the ones on the photo. The ones below were generally taken after a 12hr break, the one in the photo a 24 hr break. So somewhere in the middle??

I would be really grateful if you could all have a look and comment away what may be causing the symptoms! I was surprised that my B12 is so low. (I eat really well and GF!) and wondered if this is actually the culprit…

Annoying Symptoms:

•Hairloss

•Really tight muscles and painful tendons

•‘Fizzy’ head feeling

•Headaches (could be tight muscles in neck)

•Started to tire easily, but have trouble sleeping

•Horrible big, flabby greyish, scalloped tongue. (I have had this since I got ill)

•Feeling like death and pins and needles in hands when I wake up in morning…

Previous Thyroid results, just for reference to compare against photo:

on 100mcg Levo:

TSH 0.03 (0.35-5.50)

FT4 31.9 (10.0-23.0)

On 75mcg Levo

TSH 0.43 (0.35-4.67)

FT4 0.96 (0.7-1.8)

FT3 2.00 (1.51-3.71)

On 0mcg Levo

TSH 7.41 (0.35-4.67)

FT4 0.88 (0.7-1.8)

FT3 2.28 (1.51-3.71)

On 0mcg Levo

TSH 5.19 (0.3-3.94)

FT4 19.2 (12.3-20.2)

On 0mcg Levo

TSH 5.07 (0.3-3.94)

FT4 22.7 (12.3-20.2)

On 0mcg Levo

TSH 4.19 (0.3-3.94)

FT4 19.5 (12.3-20.2)

On 0mcg Levo

TSH 4.23 (0.3-3.94)

FT4 21.8 (12.3-20.2)

FT3 4.1 (3.7-6.7)

On 50mcg Levo

TSH 4.10 (0.3-3.94)

FT4 21.7 (12.3-20.2)

On 112.5 mcg Levo

TSH 0.05 (0.3-3.94)

FT4 38.3 (12.3-20.2)

On 112.5mcg Levo

TSH 0.28 (0.3-3.94)

FT4 36.5 (12.3-20.2)

[Mary-intussuception]

Have you been tested for Pernicious Anemia yet?

Do you know that strenuous exercise depletes T3 ? Should you be running? I thought we were supposed to do gentle exercise exercise only such as walking, swimming.

[Gilbo72 in reply to Mary-intussuception]

No Mary, I haven't. I don't really know what it is. Its all a bit new to me. I am trying to learn quickly, but somewhat confused with all the info out there and how it applies to Hashimotos. I am not even sure what folate and ferritin is. Like I said my GP, is not the sort you go and have a chat with! He would explode if I walked in with a print out of my test results. ha ha ...

[humanbean in reply to Gilbo72]

I am not even sure what folate and ferritin is.

Folate is one of the B vitamins - vitamin B9. Low folate makes it difficult for the body to make use of vitamin B12. Note that folic acid should be avoided.

chriskresser.com/folate-vs-...

Ferritin is an iron-storage molecule. Each molecule of ferritin stores a few thousand atoms of iron. Ferritin hangs on tight to your "spare" iron to keep it away from pathogens in your body, and will only release iron into the blood stream when your body needs it.

Low ferritin, low iron and low folate are very common in people with thyroid problems.

[Mary-intussuception in reply to Gilbo72]

Hi again Gilbo

Shaws has just put a post on re a link about B12 deficiency & Pernicious Anemia . Haven't read it myself yet but thought you would be interested.

xx

[Gilbo72 in reply to Mary-intussuception]

And no, I didn't realise strenuous exercise depletes T3! Oh no!

[Mary-intussuception in reply to Gilbo72]

I read it on here when I joined last year, someone from admin I think can't remember for sure.

There seem to be different opinions now though .

It's because your B12 is low in the range and your B9 (folate) although in range is at the lower end I mentioned Pernicious Anemia. You could ask GP about testing. There is also a P A forum on here. You could Google search symptoms of B12 & B9 deficiency.

[Judithdalston]

A quick look at your top private results show your folate , ferritin, B12 and Vit D all need improvement - folate and ferritin need to be at least halfway thru range ( if still menstruating then ferritin should be higher at 100-130). Vit D should be 100-150, and B12 near top of range/ over 550. If these levels were optimum your thyroid health and conversion of T4 to T3 should improve. Currently you look like you are not converting sufficiently ( the ratio of FT4 to FT3 should be in ratio between 4:1 and 3:1), so worth supplementing. You are not deficient in either Vit/ min so your doctor won't help with this- look up SeasideSusie's replies to posts re supplements ( brands, dosages etc). As you took your meds. incorrectly in relation to blood draw, it is rather difficult to comment on your Thyroid results, accept you have obviously taken a lot of levothyroxin and raised your FT4 well over range, and perhaps never got your FT3 to in upper part of its range. From experience adding T3 to T4 is not easy...so get your vits/ mins improved first, some of your symptoms might improve just with supplementing.

[humanbean]

Do you take statins? They can cause all sorts of muscular damage.

Have you ever taken an antibiotic called fluoroquinolone? It can cause all sorts of problems with tendons. Look up "What does it mean to be floxxed?".

[Gilbo72 in reply to humanbean]

Goodness me! Looked it up, how scary is that? A bit of a read... I shall at my leisure, but I am not aware of it, certainly not recently. Although before I became ill, I had just been through an emergency CS, followed by 2 major abdominal surgeries to put me all back together. I imagine they pumped me loads of stuff. And I do believe that was the start of all of this...

[Gilbo72 in reply to Gilbo72]

and no to statins. The muscle ache is a recent thing

[Judithdalston in reply to Gilbo72]

Do wonder if after all this major surgery etc if you progress this further with your Gp whether you might end up with diagnosis of fibromyalgia...I have/ had these various leg pains ( when I had been on statins for 12 years, and stopped taking them)... had all sorts of blood tests/scans, eventually to be told it is fibromyalgia. If you look on the Thyroid Uk website you will find Dr Lowe's archive and Q&As...he believed Fibromyalgia was infact related to poor thyroid diagnosis or medication. I am DIYing down his route of adding T3 to my levothyroxin ( already , though slowly , up to 37.5 mcg added to 125 mcg levothyroxin, perhaps suggesting something is wrong with my T3 receptors).

[Gilbo72 in reply to Judithdalston]

Yes Judith, that is my fear. A diagnosis of ME and Fibromyalgia! Rather than the possibility I have an autoimmune disease or a thyroid problem. I keep (hopefully) thinking one of my GPS will hear me and work with me, but they are too busy asking the computer to say no! I reckon if I had never moved my old GP would have got to the bottom of it as he knew me well. Its so down to luck when it comes to good GP care.

[penny in reply to Gilbo72]

Have you had your abdominal scars treated? If the scar tissue is not re-integrated and softened abdominal scars can cause all sorts of problems with the entire body. If you would like to know more PM me and I’ll see if there is someone trained in Scarwork in your area.

[MaisieGray]

Well you aren't "self-diagnosed Hashimoto's" any longer, as the 85.8 result formalises it for you. I'd concur that it appears you aren't full converting T4 to T3. Have you had the DIO2 genetic test to identify whether an abnormality on the gene may be negatively impacting conversion? Re. hair loss, low zinc levels can be a factor.

[Gilbo72 in reply to MaisieGray]

Hi Maisie, I am waiting for the results. So I guess at the mo I have got to assume the low vits are causing bad conversion? Does T3 help in a case like this?

[greygoose in reply to Gilbo72]

It's not necessarily the low vits causing the conversion problem. You have Hashi's, and Hashi's people are often bad converters. Have you tried taking selenium? That's good for conversion.

[Gilbo72 in reply to greygoose]

Yes I am taking selenium, although only for the last 4 months or so.

[greygoose in reply to Gilbo72]

And I'll add to MaisieGray 's list: not eating enough calories, not eating enough carbs, low Human Growth Hormone, adrenal problems… The list goes on and on.

I'd ease up on the selenium, if I were you. You're not supposed to take it for long periods at a time, so give it a rest for a while.

[MaisieGray in reply to Gilbo72]

Gilbo72 My apologies, I wrote a very detailed response to you but somehow managed to lose it .... In short, I agree with greygoose that it isn't necessarily down to low vitamin levels. Some factors might be gut dysbiosis (the enzyme intestinal sulfatase helps with conversion); selenium deficiency; stress/elevated cortisol levels; beta blockers & the anti-arrhythmic compound Amiodarone; Pro-inflammatory cytokines which are present in Hashimoto's and Graves'.

[Mary-intussuception in reply to Gilbo72]

It's just the B12 & Folate results that are low in range.

[SlowDragon Administrator]

Your B12 and folate are too low

You could/should ask GP to test for Pernicious Anaemia

Alternatively self supplement good quality daily vitamin B complex. One with folate in not folic acid may be of benefit

If you have low B12 symptoms then adding a sublingual B12 lozenge for few months too

Remember to stop any B complex or any supplements with biotin in 3-5 days before any blood tests as biotin can falsely affect test results

As others have said strenuous prolonged exercise will seriously lower T3

FT3 should be at least 5-5.5

TSH should be around one and definitely under 2

[Gilbo72]

Hi SlowDragon, thanks for the detailed response. Would any of this specifically cause the tight muscles? Hairloss? Can you tell me more about pernicious anemia? is this something you develop from hashimotos or something that causes the bad conversion? How should I approach the GP about it? thanks

[Gilbo72 in reply to Gilbo72]

Also intrigued by T3 depletion coz of excercise. Are there any links?

[greygoose in reply to Gilbo72]

It is not strictly true that exercise 'uses up T3'. It's just that when doing excessive exercise, you need more T3 for the T3 to do what T3 does. So, if you have low T3, all it can do is support that exercise, it can't do all the other things it's supposed to do, which is why you feel wiped out for several days afterwards.

Sorry, I don't have any links but it is horrendously complicated, so I hope you understand my simplification - not sure I could explain it otherwise, anyway.

[Gilbo72 in reply to greygoose]

No thats great, thanks GreyGoose and completely explains a few symptoms I have had over the years. So do you think supplements/injections on Folate, ferritin and B12 will cut it if I get them high enough?, or do you think I may need additional T3 too? I am waiting on the DNA results. (I do like running, but I guess a ultra marathon might be pushing it! ha ha.)

[greygoose in reply to Gilbo72]

The odds are you will also need additional T3. In fact, I think it's a good idea to go straight to the additional T3 and not prolong the agony thinking that improving your nutrients will sort out conversion. The odds are it won't, because there are so many things that can affect conversion, like having Hashi's. And there's nothing you can do about that. Though, of course, you still need your nutrients to be optimal, even if they don't improve your conversion.

But, one your FT3 is optimal, there's no reason why you shouldn't run a marathon. Lots of people do.

[greygoose in reply to Gilbo72]

Pernicious Anemia is an autoimmune disease - like Hashi's is - and when you have one autoimmune disease, you are very likely to develop others. So, a Hashi's sufferer with low B12 should always have their PA tested.

PA is a condition that means you cannot store B12, so you need to constantly supplement it. Which is why PA sufferers get B12 injections free for life. So, it's really something you should test for - although I can't tell you which tests it's best to have. Sorry.

[Hidden]

I have had pains in the legs ankle and knees when I first had my thyroid removed and I was put on Levo fro 6/7 months. All of the pain went when I started on NDT. Due to a third batch which was somehow bad I started on T3 only 2 months ago and guess what the pains were back, Now back on NDT and the pains have gone, weird

[Angel_of_the_North]

Apart from any thyroid issues, you might find a collagen supplement useful for helping tendons heal