Fighting with my body and I have no idea what's going on..

[blakk293]

Hi everyone,

First up, new here and it's great to have found this place.

So i've been having some issues with my health for the past year.

Little bit of back story. I am transgender (f to male) and fully post operative, meaning I have had a full hysterectomy and I have been on testosterone injections for the past 11 years.

My troubles started last year when out of no-where I had a bout of alopecia areata (never had anything like this before) had some large patches of hair loss as well as serious thinning towards the front of my head. Panicked and after the NHS and GP failed to help I sought the help of a private trichologist who gave me laser therapy and minox 1% - hair came back - all cool.

Few months later I started to experience very bad fatigue. I'd wake up in the morning feeling like I hadn't had any sleep, despite having had 8 hours - I couldn't move, i'd have to lie there and summon up strength to move. Also it seemed like overnight I felt like I had put weight on. I work out alot, i'm very fit but I felt like I was (and still am) struggling in the gym - almost like I hit a wall in terms of what I can do, the energy literally just drains from me despite the fact I know I could carry on and not being out of breath.

Following on from this I've had a serious loss of apetite, on-going aches and pains - especially on the left side of my body, it's like a rolling series of aches that come and go, knee pain, plantar fascitius, etc. Other symptoms I have been experiencing are:

- patches of dry skin on my hands

- abnormal depressive mood

- mental detachment and disinterest

- dizzy spells

- hair loss, thinning at the front of my hairline (where the alopecia hit it worst first time round) and dry brittle hair

- awful brain fog and memory loss

I've had blood tests on the NHS. My endo says there is nothing wrong with me, everything is apparently in normal range - of course the only thyroid test completed as been the TSH, FT4, Total T3. I've managed to have my testosterone injections brought closer together from 12 weeks to every 10 (my T levels were again bottom end of normal) which slightly improved my energy levels, however blood tests taken a week after my injection are now revealing my T levels are spiking at 50.5 nmol/L and the range is (10.0 - 36.0U) with my endo dismissing this as abnormal as he doesn't understand what's going on...

The reason i'm posting here is because I feel like I am hitting my head against the wall. My blood tests are 'normal' but I feel anything but, my GP is usually very understanding but I feel like I have pushed as far as I can. Is it worth me forking out the money to get a full blood panel for Thyroid? I honestly don't know what to do.

Blood results:

Serum Vitamin B12: 543ng/l (range 200 - 900 U)

Serum Ferritin: 94ug/l (range 20 - 300 U)

Serum Folate: 3.8ug/l (range 3.1 - 20.0U)

TSH: 3.11 (ref range 0.35 - 5.00 mU/L)

Free T4: 13.2 (ref range 9.0 - 21.0 pmol/L)

Total T3: 1.7 (ref range 0.9 - 2.5 nmol/L)

Sodium: 137 (ref range 133 - 146 mmol/L)

Potassium: 3.8 (ref range 3.5 - 5.3 nmol/L)

[Eddie83]

TSH is too high - you are over the AACE range. You could boost b12/ferritin/folate to top of range. But regarding thyroid testing - the diagnosis "normal" is Too often meaningless. The best thing you can do now is get the full panel TSH/FT3/FT4/rT3/TPOAb/TGAb. It is important to know if you are harboring Hashi's autoimmunity, as shown by TPO and TG antibodies. If you are, you need to find out if diet or environmental toxins are causing it. The average MD isn't going to help much with Hashi's; but many people here can. If you are feeling so bad that you want to start thyroid hormone soon, then you need to find a doc who will treat using FT3 & FT4, cuz low T3 is likely what is making you feel knockered. TSH is a poor diagnostic tool, and a very poor tool for determining optimum dose of T4 (and T3, if T4-only won't do the job).

[blakk293 in reply to Eddie83]

Hey Eddie, many thanks for your reply first up.

I will definitely be seeking out a full for what you recommended and I will also be mentioning the TSH levels to my endo (who seems entirely clueless to the whole thing).

The main thing I am seeking from all of this is some sort of diagnosis, I really want to treat my possible condition with diet and natural remedy. I'm not sure if anyone else on this forum does the same I will need to do a bit of a search.

Once again, thank you for your reply!

[Eddie83 in reply to blakk293]

Many endos have been indoctrinated into the false religion of TSH+T4! So many of them are wholly involved with diabetes these days, that they've not learned much about thyroid. If you want to use an endo, try to find a thyroid specialist. I didn't get much from allopathic medicine ... had to goto an ND to get my diagnosis of gluten-triggered Hashimoto's + hypothyroid + enteropathy.

[greygoose]

Hi Blakk293, welcome to the forum.

As Eddie says, 3.11 is too high for a healthy thyroid. And, in some countries, you would be treated when your TSH hits 3.

But, the thing about TSH, is that it fluctuates through the day. It is highest early in the morning, and decreases throughout the morning, and is lowest late afternoon, I believe. It also decreases after eating. So, on here, it is always advised to have your blood draw as early as possible - around 8 if you can - and fast over-night. And, as doctors only seem to look at the TSH, you do need to have it as high as possible, if you want them to do something about it.

So, what time was that test done? And had you eaten? And what about the other tests you've had? Were they done at the same time of day, and under the same circumstances? Has the TSH been three-ish in all of them? Or is this the highest? If this is the second or third one you've had with a TSH of over 3, then the likely-hood is that you are hypo.

So, as Eddie says, it is worth doing a full thyroid panel. But, make sure you do it early in the morning, before breakfast.

[blakk293 in reply to greygoose]

Hi there Greygoose,

Thanks for the reply, even with your words it almost feels like a relief for someone to say that there is some sort of issue with the numbers..

So the results of the thyroid test were from a fasting blood test taken early morning. I was sent to have a Cortisol level test where they inject synthetic hormone, bloods were taken before and after. I have had one other Thryoid test but was not sent the results for that.

I think I will definitely proceed with the full thryoid panel test and make sure to take yours and Eddies advice about early morning.

[greygoose in reply to blakk293]

The cortisol test you had, isn't very helpful. It will only tell you whether or not you have Addison's, which is extremely low cortisol. It will not tell you if you have sufficient cortisol levels throughout the day, to be well. The best test for that, is not done on the NHS, I'm afraid. But it is the 24 hour saliva cortisol test. That will tell you if your cortisol is too low for comfort, but not low enough to be Addison's. But, you'd have to have it done privately.

[Russellb73]

Also get your cortisol levels checked !! Just in case some of the symptoms also appear in Addison's disease or in adreanal insufficiency !

If you have had it tested already what were the results ??

Hang on in there !!!

[blakk293 in reply to Russellb73]

Before I suspected thyroid trouble I figured it could be adrenal fatigue due to having been exposed to very high stress situations without any respite and this was perhaps some sort of crash.. needless to say the test I was given wasn't the Saliva test, but a short Synacthen Test which i've heard isn't very accurate.. however the NHS doesn't provide the saliva test..

Results from that were not exactly clear to me and printed across 3 seperate sheets as follows

1: Collected 09:51AM: Cortisol 246nmol/L (pre synacthen sample)

2: Collected 10:10AM: Cortisol 233nmol/L

3: Collected 10:40AM: Cortisol 480nmol/L (post synacthen sample)

[Russellb73 in reply to blakk293]

Depends on the hospital you go to my baseline level was at 350 then went to 436 my second test was 356 to 408 my last test done in Dec was 37 and then 76

My hospital only look at 2 results not the 3 but your results at 9 am at 246 is low !

Although your 1hr test shows improvement I would ask for the test to be repeated and also find out before you have the test what there parameters are ! I've been to 2 hospitals because my first test was carried out in correctly Both have different guidance levels

The first hospital takes 3 results 9, 9.39 & 10 results with a figure of 500 being the cut off range in which you would be classed as having a deficiency.

The second hospital only looks at the 9 and 9.30 results and again yours appeared to drop so would be in range but I would question why they dropped, this hospital also classes high baselines as not AI although I continue to fight with them !

I'm on HC and it really helps alternatively see if you can get some Predisilone & see if that helps I took 5mg per day and omg I felt like the old me for a month !!

Then crashed once again ! All I wanted was to feel able to function but it caused all the issues you suggested and more !!

Send me a pm if I can help also if your not already check out Addison's.org.uk there is a wealth of knowledge and support there which has been such an eye opener !

I've been diagnosed by the first hospital as having AI the second hospital are dismissing it as my baseline was quite high.

I continue to have problems the worst is sleep I wake up every night at between 2-3 am and struggle !

My depression has hit an all time low despite everything in my life being great but I struggle everyday and I'm under so many different departments it drives you nuts

Pain management clinic

Sleep clinic

Encrinology x 2

ENT & audiology

Asthma clinic

Mental health services

Neurology

But I do have some ongoing life conditions asthma and chronic back pain the rest of these appointments have been due to symptoms which have come about in the last year !!

Good luck and if I can help just send me a DM.

Regards Russell

[helbell]

Hi Blakk,

I would go with investigating thyroid first, as advised. Really important to get antibody levels checked so you can start ticking off cause of low t4 and high TSH. If antibody comes back clear, it's worth having another test for that in a couple of months. My antibody activity didn't show in the early stages but at your TSH levels I sure as heck had all your other symptoms but, as usual, doc told me I was in range. The saliva cortisol test is dearer and you can follow up after thyroid test. Get D tested too. The catch is that low adrenal activity can drive down thyroid and low thyroid can drive down adrenal activity which is why I would go for the simplest test first. Good luck

[Josiesmum]

Food sensitivities can cause these symptoms. My daughter had the same symptoms as you with low cortisol and has had a sustained impovement in her health since changing her diet:

thepaleomom.com/start-here/...

Gradually as her health has improved she's been able to reintroduce foods. Gluten seems to be the worst offender, so worth weaning off that over a couple of weeks as it can be a shock to the system. Make sure you replace fibre with lots of veggies and probiotics for your gut. Also try to reduce stress and spend time on relaxing activities. Good luck x