NEWBY DESPERATE FOR GUIDANCE AND HELP

[mmer8625]

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.

Concerns

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.

Questions?

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 :

July 17

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

Aug 17

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

[BadHare]

Sorry to read about your issues. Have you had your pituitary checked for damageafter your accident?

[mmer8625 in reply to BadHare]

Hi BadHare - I don't think I have had it checked thoroughly and dont know what tests my doctor could do? I expected the Endo to do this because I raised the fact I had a premature menopause at age 37 and thought it might be connected as my TSH levels as far back as 2008 showed they were fluctuating (I don't have any earlier test results). He ran all his tests and said everything was ok! mmmm, interesting though that my friends here all believe I need higher Levo and supplements. Endo just told me to see a Rheumy and get on a diet to get a lot of weight off - he was fatter than me lol!

I will ask GP when I see him about damage to my pituitary and see his answer! Thank you soo much for your response, it is appeciated - mmer

[BadHare in reply to mmer8625]

They really don't know what they're doing!

Fortunately for us, Greygoose, & the good folks on here, do!

Good luck!

[greygoose]

If I'm reading all this correctly, you've had thyroid problems since 2008, before the car accident. Although, undoubtedly, the whiplash made things worse, but you are hypo as soon as your TSH goes over three. In some countries, you would have started thyroid hormone replacement in 2008, not waited until 2014, but which time your symptoms would be much worse.

Your weight has nothing to do with your dose. The number to look at is the FT3, which is just mid-range. That is more than likely too low for you to feel well. Most people need it up the top of the range to feel well.

The first thing you have to understand is that doctors know very little about thyroid - I'm sure you've already had a sneaking suspicion that yours don't! And, they know even less about nutrition. You can't just give a person vit D or iron or B12 for a month and think that's it! Job done! Because as soon as you stop taking them, levels are going to drop again. It's part and parcel of being hypo. You are going to need maintenance doses probably for the rest of your life. Certainly until your thyroid levels are optimised. So, if I were you, I would get them all tested again, then post the results and ranges on here, and let members advise you on what to take for the best results.

And, I would strongly advise you to stop dieting and limit your exercise. I've written at length on that subject, here :

healthunlocked.com/thyroidu...

I'm sure there are bits of your post that I haven't picked up on, so if you have any more questions, please do ask them.

Oh yes! Hypos normally do have high copper.

[mmer8625 in reply to greygoose]

thank you sooo much for your response. I really appreciate it. I am glad I have gone against Endos view and pushed the GP harder for an increase in Levo. I suspected my levels should be higher.

There are three queries:

If I start to feel really hypo on the 100m should I reduce it immediately or suffer onwards, and if i should reduce it should I go down to 75m or back down to the 50m which I was on in the first place. I will get things retested in 6-8 weeks of the new increase.

I think I will get my own vitamins and start them straight away. Perhaps once my Levo dose is right my vitamins may settle down. I suspect I have been moving towards a slow thryoid since before 2008. I read your post regarding dieting and will take that on board and not go mad on exercising. I will just do one walk a day to keep my leg muscles moving and it improves the pains.

The final question for the moment is the GP saying he doesnt want my TSH going below 0.1? and doesnt want my own pituitary gland turned off. Is this likely to happen if TSH goes below 0.1 do you know? I am not sure about my pituitary because I did have a premature menopause of 37 (which is unusual) and who knows this could be the route of everything. I think I was moving towards hypo long before the accident in 2013 and the accident or the stress has probably accelerated things. This is the reason I paid to see the Endo so he could consider my pituitary in the mix of things. He was more iterested in me getting weight off so I don't become diabetic I think.

Anyway, i am feeling much more confident and relaxed about things now I have shared my problems with you and others. It really does help. Many thanks, mmer

[greygoose in reply to mmer8625]

'If I start to feel really hypo on the 100m should I reduce it immediately or suffer onwards, and if i should reduce it should I go down to 75m or back down to the 50m which I was on in the first place. I will get things retested in 6-8 weeks of the new increase.'

If you start to feel hypo, it means you need an increase in dose, not a decrease. You should get retested six weeks after you start the 100, not much point in getting tested sooner, and then your dose should be adjusted accordingly. But, I think you're more likely to need an increase, not a decrease.

Be very careful what you get in the way of vitamins. I would suggest you read the responses given by SeasideSusie to others in the same position, and take the advice she gives in them as to what exactly to buy, and how much to take. Too much is as bad as too little, in some cases.

Do not start taking a bunch of supplements all at the same time. Leave at least two weeks between starting each one. Or else, in the rare case that something doesn't agree with you, you won't know which one it is.

'is the GP saying he doesnt want my TSH going below 0.1? and doesnt want my own pituitary gland turned off. Is this likely to happen if TSH goes below 0.1 do you know?'

Your GP is talking rubbish. He knows nothing about it. Your low TSH will not 'turn off' your pituitary. TSH goes low because the pituitary senses that it's not needed. Doesn't mean the pituitary is going to stop working. It has a lot of other hormones to make. And, if you're worried about your pituitary, those other hormones should be tested. Which your endo can easily do, if he can stop obsessing about your weight! He obviously doesn't know that low hormones cause weight gain! Stupid man.

Once you are on thyroid hormone replacement, the TSH is irrelevant unless it goes high - which would mean you're under-medicated. It doesn't matter how low it goes. Your doctors should not be setting your dose according to the TSH. They should be looking at the FT4, and - ideally - the FT3, to see how well replaced you are.

[SlowDragon Administrator]

Whiplash and thyroid problems are linked

wellnessresources.com/news/...

Your TPO antibodies appear negative

Personally I would want to test TG antibodies too to definitely rule in or out Hashimoto's

Your TSH looks too high and FT4 too low, if this was after 6 weeks on 100mcg, you may need further increase in Levo

Your vitamin D and B12 both too low

High ferritin can be result of Hashimoto's

See SeasideSusie detaiked vitamin supplements advice

Improving the vitamins and retest in 6-8 weeks, see how TSH and FT4 are then

If you can't get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers. DIY finger prick test or option to pay extra for private blood draw or

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results