This is my first post on this site and I was wondering what opinions others may have on my situation.
I have not been right for about two years (maybe longer), nothing specific - just tiredness, lack of energy, insomnia, dry skin and hair, loss of interest in life, no motivation, short fuse, various joint and muscle pains, hips feeling out of place, nausea after eating and drinking, excessive sweating, dizziness (with one fainting episode) and feeling as though I am ageing rapidly. I did not go to the doctors about any of this as I put it down to ageing (I am 57), the menopause, grief of losing my mum and relocating.
Things changed significantly in January this year. Out of nowhere I suddenly developed severe pain in my upper back and left arm with numbness and altered sensation in a few of the fingers on my left hand. I was in absolute agony for a couple of months (day and night) and no medication or anything else I did eased the pain. I visited the GP a couple of times but gave up as nothing they gave me helped. I was at my wits end and needed to do something so I went to see a chiropractor. They did an x-ray and found I had mild arthritis in my cervical spine; this led them to suggest that my severe pain had been caused by nerve impingement in my neck. I had eight chiropractic adjustments, but ceased treatment when I developed pain in my left shoulder.
I went back to my GP and was referred to Musculosketal Physiotherapy. During this time my back and arm pain had become more manageable, but the shoulder pain was increasing and becoming unbearable. I was having difficulty washing and dressing, my range of motion was restricted and both passive and active movements were much reduced.
After being assessed by a specialist physiotherapist, I was referred for urgent physiotherapy on my left shoulder and for an MRI to try and find out the cause of my back/arm pain. The physio thought it was due to degenerative disc disease (a natural part of ageing). They were unsure whether the shoulder and back/arm pain were related.
I attended 3 physio sessions for my shoulder and did all the exercises given. I had a small improvement in my range of motion but the pain didn't go away and activities of daily life remained difficult and were restricted. Prior to attending the first physio session, I developed tenderness around the base of my thumb on my right hand (with no injury). The pain increased to the extent that I was wearing a wrist support 24/7 with no improvement. I mentioned this to the physio, but they said they were treating me for my shoulder and needed to sort that first. They put the pain down to over use as I had been unable to use my left side due to shoulder pain. I didn't feel this to have been the case.
I also found I had nodules and thickened tendons (?) on the palms of both hands and on the sole of my left foot. I mentioned these to the physio, but they had no idea what they were. Online research suggests this may be Dupytren's Contracture.
I have now had my shoulder pain for about 4 months and my wrist pain for 3 months. My right shoulder is also beginning to develop the same problem. Sleeping at night is difficult due to the pain and I cannot sleep on my left side. It feels like frozen shoulder.
When I get up from sitting in the evenings I find I struggle to walk; my knees, ankles and feet all feel stiff and painful. I used to hobble, but it has got progressively worse and I now often have to shuffle/slide my feet along the floor because they won't work properly. I feel like I am 90 years old!
The results of my MRI showed very mild arthritic changes in the neck with a slight narrowing of one disc. These changes would be seen in most people of my age. I am now wondering whether my trapped nerve was in my shoulder area rather than my neck. I did wonder this at the time, particularly as I never actually had any neck pain.
The physio referred me back to the GP because of my developing multiple joint pains, thinking that there may be something inflammatory going on. The GP assessed me very quickly, but asked virtually nothing about my symptoms or history. My appointment lasted about 5 minutes. After months of pain with no explanation, I had turned to the internet to try and find out what the possible causes might be. I came across thyroid disease and my symptoms seemed to correlate well with an under active thyroid. My mum had thyroid disease (albeit over active) and my sister also gets tested regularly for it because of this. The doctor did not ask about my family history.
The GP ordered a blood test and talked about arthritis, I had considered this but ruled it out as my symptoms didn't really fit. I raised the thyroid issue and this was added to the blood tests. I have a feeling that this would not have been tested for if I hadn't have mentioned it.
The results came back and everything was marked NO ACTION. I was just told (by telephone message) that they wanted to repeat the Thyroid Function Test in 3 months time. I was puzzled by this as I had been told there was no action needed and everything was normal. I therefore went to the surgery and asked for a copy of my results.
All the inflammatory tests came back negative. My TSH was out of range at 5.1 (0.40 - 4.5mu/L) and my FT4 was towards the bottom end of the range at 10.1 (7.0 - 17.0pmol/L). I have read that people often function best when FT4 is towards the top of the range.
Due to my level of pain and the length of time that I had been suffering, I decided that I did not want to wait another 3 months and went back to my GP (I took my partner with me as I readily accept what GPs tell me but he is more persistent).
NICE Guidelines state that symptomatic patients under 65 years of age with a TSH between 5 and 10 and normal FT4, should be given a trial therapeutic dose of levothyroxine. My results indicated that I was in this category so I didn't anticipate any problem when asking for some trial meds. At long last I had found the cause of my joint pain and I was going to be able to get my life back, I would be able to hang out my washing to dry, hooray. How misguided I was to even think that!!
The GP was incredibly reluctant to give me a trial dose. I was told that I was only slightly out of range and that all my other tests were normal. I was also told that my symptoms were not suggesting thyroid dysfunction. I asked what people normally complained of and was told weight gain, constipation and tiredness. I had mentioned the tiredness and also mentioned how this had recently got much worse. I also said that I had gained weight and found it impossible to get rid of it. I had not suffered from constipation but had had a change in bowel habits (less regular and from daily to sometimes every other day).
I had written a list of all my symptoms but felt too embarrassed to show them, it was a huge list and I thought she would think I was being a bit of a hypochondriac or trying to convince myself there was something wrong with my thyroid. I didn't mention all the other things because my main problem was joint pain. Also I would not have gone to the GP complaining of tiredness and weight gain because I didn't think there was anything wrong - just part of getting old, stress or the menopause.
I have the brain fog thing and am also much clumsier - drop stuff, bump into things. I have lost the hair on my arms and big toes, my hair has lost it's shine and I no longer look like a lion (my partner's words), I fall asleep watching TV, my arms are weak and I find it difficult to get out of bed because my arms will not support me, I wear loads of layers and sometimes have to have a hot shower as I cannot get warm, I have little or no interest in sex, mood swings, always snapping at my partner, loss of interest in stuff, don't want to go anywhere or do anything, feel like I've got PMT a lot of the time, dry skin, cracked heels, more OCD than normal, bouts of dizziness and acid reflux from time to time.
This is a long list of symptoms and I am aware that they may not all be related or significant. I have listed them in case someone else finds them useful.
Despite my biochemical results suggesting an underactive thyroid and me having a lot of the symptoms, the GP was in total disagreement. So we asked the question, if it wasn't my thyroid, what was it? The GP suggested gout, fibromyalgia or the menopause. The only likely one of those is the menopause in our opinion. If it is the menopause, why is my thyroid out of range?
I asked the GP, if the menopause was causing my joint pain, would it then eventually get better? I was told no. I then said, "So I will have to live with this for the rest of my life? I am only 57." They had no answer to this.
I couldn't understand why it wasn't a problem because my TSH was only slightly out of range? What is the point of having a range in that case and how far out of range does it have to be before it becomes a problem? I know some GPs will only treat when TSH is above 10. If you have symptoms with TSH 5, then surely that's a problem? Clearly not if your GP doesn't think your symptoms are indicative of thyroid dysfucntion.
There is a lot of information online suggesting strong correlations between frozen shoulder, wrist tenosynovitis and Dupytren's contracture - all of which I seem to have. The GP didn't seem to think these symptoms were relevant and more or less ignored them.
Anyway, I am now on a trial dose of levothyroxine but have only been given 25mg/day so am not sure whether this will be effective or not. It was a real battle to get that and it was only because of my partner's persistence that it was prescribed.
I am confused after seeing the GP. Do I have a thyroid problem or is it the menopause or something else? If it is the menopause, why is my TSH elevated and my FT4 on the low side?
Just wondering what people on here think. I apologise for the lengthy post but I needed to give a full a picture as possible. I also thought it might help others who find themselves in a similar situation.
All I want is to get my life back.