Hello everyone. I am new to this site though I was on the Polymyalgia site for a short while which I found very helpful, so I am hoping someone here can help me. I am embarrassed to write such a long posting but I am desperate to try to move forward with my health even if it means having to accept that this is now ‘my lot for life’ ! I have recently been diagnosed with an underactive thyroid, fibromyalgia and have in the last few years been diagnosed with a mild degenerative cervical spine.
My historical TSH levels have fluctuated: 2008– 3.22, 2011-3.17, 2014-2.9, Nov 16-4.3, Dec 16- 4.73 put on 50m Levothyroxine, Aug 2017 - 1.22.
August 2013 whiplash
After a car accident I slowly developed severe memory and concentration problems (brain fog) with pain in the neck, shoulders, upper spine. I was given an MRI scan which showed a mild degenerative cervical neck from C3-C7 (common at my age, 64). I went on to develop cold Urticaria in cold weather and over sweating in hot weather, tinnitus and sinus problems. All of the symptoms improved after about 2.5 years but continued to be a problem.
October 2016 TSH rising
I woke up with severe pain across both kneecaps and thighs, along with asthma type breathing, together with severe exhaustion. I could not naturally uncurl my legs in bed and had to unfold them by hand and had thigh pain all day. This went on for a few weeks so I went to the GP. The exhaustion cleared up after a few days. The GP ran blood tests.
December 2016 Levothyroxine 50m
GP put me on 50m Levothyroxine as my TSH had increased again to 4.73.
The pain in the neck and shoulders was now joined by pain in the hips, elbows, knees and thighs which are mild to moderate. They can be burning, aching or shooting. Memory (brain fog) improved, but nowhere near as good as before the accident. Some weeks the pain can improve and I can get on with life but then it gets worse again. Too much alcohol also seems to trigger an attack so obviously I am avoiding this now.
February 2017 Ultrasound Scan
A scan showed thyroid and parathyroid as normal. Thyroid was not enlarged but slightly smaller on the right side (where most of my neck pain started in 2013). It was smooth – no nodules. Normal submandibular and garotis glands.
April – August 2017 – Various Supplements
April 2017 prescribed Fultium Vitamin D3 800unit one a day x 28 days.
May 2017 prescribed ferrous fumarate 322mg one a day x 30 days.
May 2017 prescribed Vitamin B compound strong tablets one x twice a day x 28 days.
(After taking ferrous fumarate and Vitamin B supplements I felt sooo much better (75%) and thought I was getting better but I slipped back again within a few weeks).
Aug 2017 Corticosteroid Prednisolone 20mg a day x 7 days
September 2017 - Endocrinologist
I saw a private endocrinologist who ran several blood tests which were all normal (see results below) so he said my thyroid was ok and didn’t need to see me again but referred me to a Rheumatologist for aches and pains. I have never had Reverse T3 test done but not sure if the tests by the endocrinologists were sufficient to check T3 absorption.
October 2017 – Rheumatologist
The Rheumy diagnosed Fibromyalgia (said definitely not Polymyalgia or arthritis). Both consultants told me to lose two stone in weight as I am overweight, borderline obese. No medication offered. I don’t take pain relief and the pain doesn’t keep me awake.
October 2017 – GP increases Levo 50m to 100m
I still have other symptoms – hair loss, eyebrows falling out, highly irritable, not much motivation, feeling cold, hot flashes , head sweats, sleep heavily clenching teeth waking unrefreshed, urgent bladder, dry skin, wrinkled skin aged 5 years, odd days of mild asthma-type breathing.
In view of these symptoms and the muscle/joint pain, I asked the GP if I was deficient in vitamins or iron again. He said the last test results in July/August all looked ok but I could take a general supplement over the winter if I wanted to via the chemist. He did not offer to re-test.
I told him I still felt I was either not on enough Levothyroxine or not absorbing T3, even though the Endo has said all is ok, and I asked him to increase my dose from 50m Levo to 75m, but to my surprise he put it up to 100m and said if I felt hyper to cut it down. He said it was ok to increase to 100m providing my TSH level did not drop below 1? He was concerned about turning off my own pituitary gland THS supply. He did not suggest a new blood test in 6-8weeks.
I now see on this website that Levo should be put up by 25m at a time, not 50m, otherwise I will feel quite poorly!!. I am on day 10 of the increased dose. (I take it first thing in the morning with full glass of water and at least one hour before any other drink or food). The only changes I have noticed so far are I am waking up earlier and feeling more refreshed but my eyelids are starting to swell. I have lost half a stone in two weeks – though I have been purposely dieting in accordance with advice from consultants and been on 1,000 calories a day and increased my exercise, so this loss could be a combination of my efforts and increased Levo.
Am I properly medicated at 50m for my weight of 12st 6?
Am I cutting of my pituitary TSH by increasing Levo to 100m?
Has my thyroid been on the decline since the accident in 2013 until symptoms got worse and worse and I collapsed with exhaustion in 2016? Perhaps all these symptoms have been my thyroid all along and not whiplash or mild degenerative cervical spine issues. Could the aches and pains be long term deprivation of thyroid hormones?
Blood Test results which might be useful :
Transferrin: 2.39 (1.8-3.6g/L) Transferrin saturation index 27%
Iron level: 14.2 (11-30mmol/L)
Ferritin: 243.8 too high (10-200mmg/L)
C- reactive protein: 8.2 too high, though GP not concerned (<5mg/L) was.4mg/L Nov 2016.
ESR (erythrocyte sedimentation rate): 12mm/hour - Normal – moved up from 2 mm/hour – GP not concerned - normal
Neutrophil: 2.41 (2-7x10*9/L) Too Low - I have been historically low
Total white blood count: 4.04 (4-11x10*9/L) Low
Basophil count .02x10*9/L (0-.1x10*9/.L) March 17 was 0.04 x0*9/L
Magnesium: 0.88 mmol/L (0.7-1mmol/L)
Calcium: 2.39 mmol/L (2.2-2.6mmol/L) May 2.42, March 2.27
TSH: 1.22 (0.3-4.2mU/L)
FT4: 13 (9-19pmol/L) March 12.9
FT3: 4.2 (2.6-5.7pmol/L) March 4
Vitamin D: 60nmol/L Normal – March 48
Folate: 4.4 (3-20mcg/L) - March 5.6
B12: 317ng/L (180-900ng/L), July & March 289
Zinc: 16.8 (10-18mmol/L)
Copper: 20.08 too high (11-20mmol/L) GP not concerned
Total cholesterol: 7 mmol/L…March 17, 6.7
HDL Cholesterol: 4mmol/L…March 17,1.4
LDL Cholesterol 4.5 mmol/L..March 17,4.8
Total Cholesterol HDL ratio: 5.1…March 17, 4.9. Oct 14, 3.8
Selenium – not tested
Sept 17 - Endocrinologist’s Results:
Anti-smooth muscle auto anti bod, Anti mitochondrial auto anti bod, Anti liver and anti-kidney, micro ab lev, Parietal cell auto antibodies, Anti-nuclear factor – All Normal
Tissue transglutaminase IgAlev: <1.9CU (<19.9CU)
Thyroid peroxidase anti bod lev: <35IU/mL (<60IU/mL)
IgA: 1.8g/L (0.8-3g/L)
Cortisol 306 nmol/L - Normal
Se non HDL cholesterol level – 5.6 Normal