Advice needed for further testing

[SimonA87]

Hi,

I'm new to this forum, I am a 29 year old male and have been dealing with fatigue and other problems for about 13 years. After getting very frustrated with my GP, I've spent the past year ordering many fatigue and immune tests privately.

The only significant results have come from the following 2 thyroid tests (both taken at 11am):

====Test1====

TSH 5.00 (0.27 - 4.20 mIU/L)

T4 Total 75.9 (64.5 - 142.0 nmol/L)

Free T4 16.53 (12 - 22 pmol/L)

Free T3 5.30 (3.1 - 6.8 pmol/L)

Anti-Thyroidperoxidase abs 7.2 (<34 kIU/L)

Anti-Thyroglobulin Abs 19.1 (<115 kU/L)

====Test2====

TSH 6.22 mIU/L (0.27-4.2)

Free T4 17.8 pmol/l (12.0-22.0)

I can see the results suggest subclinical hypothyroidism but I am curious if I should be doing any further tests before I speak to my apathetic GP.

For example, do you recommend testing for Cortisol and/or Testosterone in my situation?

Thanks for your help.

[Learner1]

Yes.

The other problems are likely having an impact.

Have you been checked for infections like Epstein Barr, Cocksackie, chlamydia pneumoniae, mycoplasma, HHV6, cytomegalovirus, Lyme, etc.? Or intestinal parasites?

Has your doctor tested your immunoglobulins, serum ferritin, hsCRP, etc.? Hemoglobin, hematocrit, MCV, B12, and folate? Or heavy metals, like mercury, arsenic, lead, and cadmium?

You might also look over on Health Rising at the new developments in Chronic Fatigue Syndrome.

Your TSH still is high. Does your doc have an explanation? Has he checked rT3?

[greygoose in reply to Learner1]

Learner, I think this has been mentioned before, but you are in the US, and most of the people on here are in the UK. Things are different. The OP just said that his doctor is apathetic, so he will hardly have done any of the tests you mention. You can't even get an rT3 on the NHS - and asking for FT3 is like trying to get blood out of a stone. So, it's not very helpful to reel off all those tests that the OP is never likely to get done.

[Learner1 in reply to greygoose]

Both the US and the UK have problems with their health systems. I sure don't feel lucky with ours.

Even though I have health insurance, I have to pay out of pocket for most of the healthcare getting, well over $100,000, as my insurance doesn't think what I'm doing is "standard of care." The info they operate on is 15 years out of date.

I've been very ill, but determined to get my health back, and believe me, it's not common for doctors here to order these tests either. I've been to conventional doctors who can see that I'm sick, but don't know what to do with me or even read my lab results properly, including my thyroid labs. But, I've finally gotten answers through this testing and am finally on a treatment plan to get well, and making progress. If I sat around only getting the healthcare that was free, I'd still be in the dark.

If you don't know what problem you're solving, you may never get well. You can muck around with T3, T4, B12, folate and iron for years and still be quite sick, because you never found what caused the thyroid to get out of whack in the first place.

I have provided solid information, based on the most recent science to try to help people clearly searching to get well. These tests exist and doctors exist who will order them, whether they're in your postal code or not.

If people know specifically what to ask for, at least they can begin to find doctors who will help them and labwork to get the answers they need and treatment they deserve.

[greygoose in reply to Learner1]

Yes, I totally agree with you on many points. But, I don't think you appreciate the limitations of health care in the UK. It may not be perfect in the US, but you do have more possibilities. The majority of GPs in the UK would laugh at you if you asked for all those tests.

[Learner1 in reply to greygoose]

The writer apparently was in the UK and apparently was able to get tested.

Most docs in the US would laugh, too.

It just takes creativity, persistence, and a suspicion you haven't gotten to the bottom of things.

[greygoose in reply to Learner1]

Well, the OP is somewhat unusual, then. But he did say that he had to pay for the tests. I think we just have to take a measured approach when replying to people who labour under a different health system to our own.

[Learner1 in reply to greygoose]

I think the answer is to be willing to pay for the care you need, wherever you are. And to be persistent in finding answers.

[greygoose in reply to Learner1]

Not just willing, but able. And, if people have lost their jobs, because they have been so ill, they aren't always able to do that.

[Learner1 in reply to greygoose]

I totally understand, and am under great financial strain myself. I'm trying to get well before I run out of money, and get on with my life.

That's why it's important to share good information about the most up to date science and clinical practice.

If people can get their doctors to help them find answers and get on appropriate treatment before they lose their jobs, that would be a very good thing, for them, and for everyone else, too.

[greygoose in reply to Learner1]

Except that, due to doctor ignorance, that rarely happens.

Ok, I'll let you have the last word, now. lol

[SimonA87 in reply to Learner1]

Hi Learner1/GreyGoose, it's true that my NHS doctor hasn't done much investigation aside from a Full Blood Count and I pushed him for a HIV test because I felt so lousy.

I've been ordering many private tests over the past year as I keep getting more and more health problems including lactose intolerance, other food intolerances like coffee and potatoes, granuloma annulare on my hands, scalp folliculitis, burning mouth syndrome and mouth ulcers.

Learner1, I've done most off that list and only the HHV6 was positive but latent. I'll have a look at HealthRising.

Thanks

[Learner1 in reply to SimonA87]

For the HHV6, was it a PCR assay, IgG only, or IgG, IgA, IgM? The pattern for chronic infection looks different than for an acute infection, which many doctors will miss.

Have you tried a gluten free/casein free diet? Many times, those will drive development of other for allergies and cause intestinal malabsorption, snowballing into other health problems. The gut damage can also lead to an inviting environment for intestiinal pathogens, and the funny thing is the symptoms may not be in your intestines, but in other systems of the body. The Food Intolerance Bible by Anthony Haynes is a good resource for self-troubleshooting.

The ANA test is a also a good idea.

If you'd like to dialog further, feel free to PM me, I have some other ideas as well, but likely too much for this public forum.

I'm not a doctor, just a very experienced patient who hangs around other patients with interesting problems, so I'm happy to share what I know if it can help you.

[shaws]

Symptoms for hypothyroidism can begin long before we are diagnosed. The main problem is that the Guidelines in the UK are abominable in that they inform doctors not to prescribe until the TSH is 10. Whereas in other countries they prescribe if it reaches 3+.

This is from our website Thyroiduk.org.uk who are at the forefront of trying to get some sense into the Professionals in the diagnosis and treatment.

thyroiduk.org.uk/tuk/diagno...

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

thyroiduk.org.uk/tuk/about_...

The aim of replacement hormones (levothyroxine) is to get the TSH to 1 or lower.

[Hidden in reply to shaws]

wow. I had no idea that your drs won't prescribe until you get to 10. That's inhumane in my opinion. Now I understand a lot more of this forum. That's just wrong on so many levels, I'm sorry.

[shaws in reply to Hidden]

It's barbaric. Before the blood tests were brought in along with levothyroxine and false statements were made about the instability of the dessicated thyroid hormones which have been in use since 1892 - before that we just died an awful death.

When levothyroxine was introduced around the 60's I believe, I think first in the USA doctors were paid to use levothyroxine and rumours abounded that it was much more efficient treatment along with the blood tests as doctors would know the actual amount in our bloods and only to go by the TSH.

With NDT (dessicated thyroid hormones) there were no blood tests and we were given sufficient until our clinical symptoms were removed. At that time there was no fibromyalgia nor chronic fatigue as most likely the NDT eased these symptoms too with patients who weren't hypothyroid. Also it was made from pigs' thyroid glands.

thyroidscience.com/Criticis...

Doctors also misunderstand what the ranges mean. The main ones are the ranges and the 'normal' top is around 5 and in the UK doctors have been told not to diagnose until it is around 10.

Doctors prescribe hormones to the patient and as soon as the TSH is anywhere in the range even just below the top, they stop increasing dose with the result patients still suffer symptoms which are then assumed not to be due to hypothyroidism but to 'other' problems so they get additional medication for those but still the patient isn't well. Doctors know no clinical symptoms.

Before the blood tests and levo doctors knew all the clinical symptoms, could tell without blood tests and patients given a trial of NDT until symptoms were relieved.

Many UK doctors appeared before the GMC for daring to prescribe other than levothyroxine and some lost their licence to treat patients. Some resigned. One in particular was persecuted for daring to go against the Endocrinology's guidelines as he was a Virologist. Eventuall he died of a stroke most of his patients stated as he appeared before the GMC for treating patients against the guidelines. He never lost his licence but did die of a stroke his patients/friends/relatives are convinced due to the strain of these appearances.

worldthyroidregister.com/Le...

[Hidden in reply to shaws]

wow!!!! I'm so sorry but it does give me the perspective I needed because some of the posts were confusing to me. I can't even imagine. Seriously can't imagine. I had on test that was 5.3 the next in three months was 6.5 and we started meds. Now I get blood test every twelve weeks and if it needs changing doc just calls the pharmacy. I wish there was something that could be done. I know my symptons were overwhelming, can not begin to bear the thought of what would happen at 10, then get to a good level og meds and have that reduced. Like living on a freaking roller coaster.

[shaws in reply to Hidden]

If you are new to taking thyroid hormones, you should have a blood test every six to eight weeks until you are on a dose which has resolved your symptoms. Then a yearly test is sufficient unless symptoms return.

[Hidden in reply to shaws]

I also have aspergers so we keep close check on a lot of stuff.Especially an

ything that might exacerbate anxiety. sigh.....

[shaws in reply to Hidden]

I believe that if we have one autoimmune disease we are apt to get others. I have three at present and I'm sorry you have aspergers and have to keep a close eye on symtpoms too.

Hopefully the New Year will be a healthy and kind one for you without too many upsets.

[Hidden in reply to shaws]

Agreed! I've been aspergers since birth, it doesn't affect my immune system directly, but can if I am stressed. Cognitive therapy has been a great thing for me. Also a high IQ helps but sometimes hinders. lol

[SimonA87 in reply to shaws]

Thanks, I'll raise it with my GP and see what he says.

Would you mind sending me details of where to buy levothyroxine online? I may try it as a last resort.

[shaws in reply to SimonA87]

Sorry for the late reply. If you put up a new post asking where to source levothyroxine and asking for a Private Message to be sent to you with information.

[SimonA87 in reply to shaws]

Good to know, thanks.

[Sheepcoat]

Hi Simon, have you ever had your ANA (anti-nuclear antibodies) tested? I have had chronic fatigue as well as loads of other symptoms for years, including bladder problems, food intolerances, alcohol intolerance, palpitations etc since around 2008. I was absolutely certain my symptoms were thyroid related because my mother has it and I also have high thyroid antibodies, but after seeing tons of specialists and paying privately to see an endocrinologist, I kept being told my thyroid function was OK and it isn't over or underactive (which is true). I tried thyroxine which just made me feel as though I was going overactive, so I accepted my symptoms weren't thyroid related. Anyway, after reading someone else's comments on here, I paid privately for the ANA test (around £100 with Blue Horizon) which was positive. I got referred to a rheumatologist through my GP and have been diagnosed with lupus...at long last. I think the GP should be able to do the ANA test for you..tell him/her you suspect it might possibly be lupus. But also, based on your thyroid results, your GP should be able to give you a trial of levothyroxine to see if it makes you feel any better... but try the ANA first- at least you can rule it out if it's negative.

[SimonA87 in reply to Sheepcoat]

Hi Sheepcoat,

Yes, I did the ANA test with Medichecks for £59. It was negative

Thanks for the info, I am hopeful the levothyroxine will help as I have days where I feel really low and others not so bad. It feels like some kind of fluctuating hormone but if there is an underlying condition like Lupus, then I want to find it.

[Sheepcoat in reply to SimonA87]

Hi Simon,

OK well at least you can rule out lupus then. Although when I had mine tested privately, it showed up as low (although still positive). The next time it was tested by the consultant it was much higher!

I know what you mean about fluctuating hormones- that's exactly how I feel. Some days I feel really tired, other days I feel wired, some days I feel like crying at adverts, other days I'm very irritable. Not to mention sexual problems! I think the hormone prolactin has a lot to do with it. I think prolactin is generally high in people with thyroid disease and it can cause all sorts of problems with your other hormones. I was first referred to the endocrinologist due to high prolactin (not due to thyroid levels), as high prolactin can indicate a small tumour on the pituitary gland. I had an MRI and it was clear, and the endo gave me tablets to lower the prolactin but they didn't improve my symptoms. I'm assuming you've had prolactin tested in your full blood count?

[SimonA87 in reply to Sheepcoat]

That's interesting, my problems started around puberty. I developed a couple issues with bone growth, so it's possible there is a tumour somewhere. I definitely will look into that.

I want to check for Adrenal Fatigue as well, things like cortisol and testosterone but I understand it's very hard to make a diagnosis of conditions such as Cushing's disease.

[Sheepcoat in reply to SimonA87]

If you had an issue with bone growth, get your growth hormone tested aswell. I had adrenal function tested which was the short synacthen test, but think the specialist has to order that. If you can afford it, pay privately to see an endocrinologist and you can get your bloods done through your GP on the NHS as long as the specialist writes to your gp and tells them what tests to do. You just need a consultant who will do a load of hormone tests for you.

[SimonA87 in reply to Sheepcoat]

Thanks