Anxiety about Thyroid Test Results: Hi, my name... - Thyroid UK

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Anxiety about Thyroid Test Results

Andyb1205 profile image
22 Replies

Hi, my name is Andy and this is my first post! I'm 26 years old, was getting along quite well in my life and accepted into a good university only to fall off track and lose the past 5 years of my life to deteriorating mental and physical health, I'm now 26. I would greatly appreciate any input on these lab numbers. All I can think of is that either my thyroid is affected by mild hypothyroidism or obesity, and it is the chicken or egg question with the two and my Vitamin D deficiency and low B12 as I have not had a healthy lifestyle for years (smoking, lack of exercise, unhealthy diet). It doesn't look look like I have Hashimotos but I do have a problem with T3 conversion perhaps. Either my lifestyle or thyroid has also possibly given me low stomach acid. In brackets is the range.

July 2013 TSH 5.30 (0.30 - 5.50)

Ferritin 212 ( > 14 )

I had a painful bout of tonsillitis on both sides last lasted a few months. Cleared up by time I saw ENT (long waiting list) and before next TSH test. Have had recurring tonsillitis ever since here and there, never as bad or big rest of the time still have a chronic enlarged tonsil on one side.

March 2014 TSH 4.20 (0.30 - 5.50)

Vitamin B12 457 (156 - 698)

T4 Free 15 (11 - 22)

T3 Free 4.9 (4 - 7.8)

August 2014 TSH 0.02 (was on 120mg of Erfa, self-dosed to that dose)

T4 Free 17 (11 - 22)

T3 Free 6.2 (4 - 7.8)

Thyroperoxidase Ab 11 ( < 35 )

Mid June 2016 TSH < 0.01 (0.30 - 5.50) (went off Erfa 120 mg medication after this)

T4 Free 15 (11-22)

T3 Free 5.2 (4 - 7.8)

August 4 2016 TSH 3.35 (0.32 - 5.04)

Ferritin 120 (24 - 444)

* Vitamin B12 166 (153 - 655)

Testosterone 16.5 (8.4 - 28.8)

* 25-Hydroxyvitamin D < 20 (75-150)

Doctor said I'm deficient in Vitamin D, been on supplements since. Said I'm fine for B12 but I know I'm not so been self-supplementing that since.

August 22 2016 TSH 2.37 (0.30 - 5.50)

Thyroperoxidase Ab 16 ( < 35 )

T4 Free 15 (11-22)

* T3 Free 3.9 (4.0 - 7.8)

What's strange is that while in 3 weeks my TSH improved from 3.35 to 2.37, either naturally or the Vitamin D and B12 supplements, the T3 is borderline below range. Also, I have self diagnosed with Complex Trauma/PTSD having had childhood abuse from the family, the stress can be a possible factor somewhere.

I should add, I want to get a blood test done for thyroglobulin antibodies but will need to wait for my doctor to be back from his one week vacation.

Anyways, thanks in advance for the help!

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greygoose profile image
greygoose

Andy, please don't blame yourself for any of this, it's not your fault. There is no knowing why your gland started to fail. Obesity does not cause hypothyroidism, nor does low vit D. It's the hypo that causes obesity and low vit D and low vit B12 and low stomach acid, and a whole host of other problems - over 300 know symptoms! (But you don't have to have them all to qualify. :) ) But, having said that, it's well-known that abused children go on to have thyroid problems - I've seen that so many times.

As for the conversion, that's rather strange... One test it's average, one test it's good, then next, it's terrible! And you must be feeling absolutely awful with that low T3! But, it has to be said, you don't have an awful lot to convert. For good conversion, your FT4 needs to be higher than that.

Ahhh! Just reread and seen you are on Erfa, now. That would explain the low FT4 and low TSH. So, forget those, they're not important - and you should not have gone off the Erfa because of that suppressed TSH!

Your vit B12 is not alright! In fact, your doctor should be testing your for Pernicious Anemia and considering injections! A B12 that low is very dangerous. He should know that, or he's going to kill somebody one day!

What did your doctor give you for the vit D? How much? It's important to know because they usually give you the wrong thing, or too low a dose. But, in any case, the increasing vit D and B12 would not have any effect on the TSH.

If you're not back on the Erfa by now, you very much should be. And if you are back on it, you need an increase in dose. You've got to get that FT3 up again! It was good in August 2014.

I don't know where you are in the world, but the NHS in the UK will not test for thyroglobulin antibodies. They consider it very rare that anyone ever has them raised if TPOab are low! How daft can you get! lol

Andyb1205 profile image
Andyb1205 in reply togreygoose

I am taking 50,000 Vitamin D3 a week (10,000 over five days) and will do this for 8 weeks before being tested and put on a maintenance dose. I've self-supplemented with 5,000 - 6,000 B12 sublingual Methylcobalamin daily for two weeks now. Thinking of when to lower to dosage, I hear you can't overdose on it thankfully. Also I've read that taking it sublingually is as good as injections though for very low levels I can see how the injections may be necessary. I will demand the doctor to test me for pernicious anemia and the B12 again immediately!

Thank you for the kind reply greygoose! I'm here in Canada. Over here we can have self paid tests, and Vitamin D for my age is always self-pay, as well as T4 and T3 which are only covered if the TSH suggests they need to be looked at. In fact the lab has my blood sample for TgAb test but because the doctor forgot to write that it's self pay, and he's on vacation for a week, they refuse to test it as its not covered unless I have suspected thyroid cancer. So I need to do the test again and pay the $21 for self-pay test lol.

The reason I had gotten off of Erfa, to be honest, was because I did not feel much better and get the miracle I expected in the last two years. Depression and anxiety further demoralized me to follow up with the necessary tests which probably affected the Erfa's ability. After having that test a couple months and seeing around the same Free T4 and T3 as when I first had the test thee years ago before Erfa, I became anxious on if Erfa was even working and pushed me from subclinical hypo to sub hyper.

I also didn't like that the naturopath was pushing my expensive products, from shakes to her brand of vitamins and supplements. She should've also tested my Vitamin D but she didn't since I could've been low or deficient at that time as well explaining my muscle weakness. I felt I wasted money as the they only made my stool better but not the rest of my symptoms and I didn't lose weight despite exercising. She got me to do a three hundred dollar allergy test where my blood got shipped to America where I only tested positive to milk and beef (but not cheese, etc) and got paranoid enough to avoid these but never life threatening whenever I accidentally had them. My recent blood test showed I am negative to casein and beef and egg but very positive to pollen, I'm being referred to an allergist to get more full testing that's covered. I've felt chest pains and digestion problems from eating beef and digestive problems from eggs but no IgE, perhaps it's just trouble digesting without proper enzymes! Anyways, perhaps I was getting better but then summer of 2014 ended and I had to return to my studies in Montreal, only renewing my prescription there in fear of the medication being taken away if I got tested.

I went off the Erfa couple months ago because I wanted to get my stabilized numbers and though the TSH is lower indeed the Free T3 has taken a dip and the B12 and Vitamin D numbers are shocking! I am starting afresh to tackle my health and possible thyroid problem.

Also, you know, I had read about how even in America the range for B12 starts at 200 and in Japan it's 500 - 1200 since couple decades ago. I tried my best to control my anger when he said that the B12 is low but it's nothing serious you can choose to supplement it, since the doctor has been thus far cooperative in getting me the tests I want. The B12 has dipped from 457 to 166 in two years despite my meat diet and reserves are depleting! In fact I was surprised when I got the result of 457 two years ago because I was feeling the numbness and tingling symptoms. I've read online about how B12 can have psychiatric symptoms including psychosis which I've definitely felt over the past two years.

Andyb1205 profile image
Andyb1205 in reply toAndyb1205

Apologies for the long post but the past 5 years of my life lost have been long! Technically I only got the TSH tested in summer of 2013 first but a 5.30 was only 0.20 to be considered hypothyroid even by conventional standards, so even when being fair I still lost 3 years due to doctors' fault.

When I was 18, being 5 feet 111 inches tall, I weighed around 145 pounds (still a little skinny fat). Yet in the span of a few months I gained at least 60 pounds, weighing over 200 and later reaching 210-215 range. The only variable I can think of is stress and more importantly that's when I started smoking cigarettes. It's possible my health was going to catch up with me sooner or later, or an alteration of the thyroid led to the massive weight gain, I'm leaning more and more towards the latter explanation. I've been around that range ever since, had recently fell to 185 pounds in past two years but since going off medication to stabilize thyroid naturally I'm back to 200. I am working on going clean from cigarettes and alcohol to fix my health, but I can't but think how those with a similar lifestyle as mine look far healthier than me. Anyways I'm at a point in my life when I was must tackle my mental and physical problems head on since this is a crucial stage of development in my life!

greygoose profile image
greygoose in reply toAndyb1205

Well, 457 is still too low for B12. You're right about Japan, their range does start at 500. And the Pernicious Anemia Society in the UK says that 1000 is optimal. So, you were too low.

From all that you've said, I suspect you have low stomach acid. Do you get acid reflux? Do you take anything for it?

Forget the TSH, it really isn't important. It's the FT3 that is the most important number - especially when you're on NDT. According to your Frees, you have never been anywhere near 'hyper' (over-medicated), quite the contrary.

It is your low T3 causing you to put on weight, that much is clear. But it will be easier for you to lose once you optimise your T3. (It's also low T3 that is causing your depression, etc.) In the meantime, forget exercising, it is not going to make you lose weight, and could make you put more on. And, no low-calories diets, either, for the same reason. Concentrate on optimising your T3.

A lot of hypos take up smoking and start drinking, in an attempt to make themselves feel better. Lots of hypos become addicted to something. But, that too will be easier when you are optimally medicated. You will be able to give them up then.

It is highly doubtful that you will be able to find a way to 'stabilize' your thyroid 'naturally' (two words I hate, because they are pretty meaningless, just words that doctors throw around to make it look like they know what they're talking about. lol) You need to keep taking the NDT!

Andyb1205 profile image
Andyb1205 in reply togreygoose

Recently I have been wondering if I have some problem where the thyroid and the T4 to T3 conversion can be resolved naturally through diet and exercise and stress management, I thought that at least I can try this out to factor out the variable as one must be on medication for rest of their life, though on other hand time is precious. I'm also reminded of how I did not lose weight last time I was on a diet and exercising for months and instead gained!

I am thinking of asking my doctor to be referred to an endocrinologist but there will be a waiting time and because I can't simply walk into a doctor's office to get my prescription renewed I will need to visit a functional medicine type doctor which isn't covered but my health is my health and I have some savings. Anywho I'm wondering if I decide to get medicated again, should I go back on Erfa (I've read that the dosage for NDT varies from batch to batch but I've also read this is exaggerated), try a synthetic T4 first and then add in synthetic T3 if needed or synthetic T4 with T3 rather than NDT, or do I perhaps only need a T3?

Btw, speaking off addiction, besides going off here and there I've been smoking cigarettes for the past 8 years, never had a drinking problem but I like to drink when I do, and have been addicted to marijuana since I was 18 and a half (depending on stress, few times a week to every day to few times a day), brief times off here and there. But I've been mostly clean for the past 4 months now, with exception of one drunk night when I had one drag. IMO I think I may have ADD as well and marijuana helped with that, though I wonder if it comes from the low thyroid or is comorbid with it.

greygoose profile image
greygoose in reply toAndyb1205

I don't think any thyroid problem has ever been solved by diet and exercise. As I said, exercise can make you worse, because it uses up your T3, which you cannot easily replace. So, just gentle walking, swimming or yoga.

As long as you eat a clean diet, no processed foods and no unfermented soy, you should feel a bit better. But, it is not going to repair you thyroid gland.

Stress management will help your adrenals, which in turn will help your body to use the thyroid hormone you are taking. But, that will not repair your thyroid gland.

Your absorption will be helped by increasing your stomach acid, as humanbean explains (very well) below. But that won't repair your thyroid gland, either. You really do need that thyroid hormone replacement.

What you've read about the strength of Erfa varying from batch to batch is just propaganda put our by Big Pharma, who want you to take their synthetic hormones, instead. It is perfectly possible that NDT does not suit you. It doesn't suit everyone, it did not suit me. But, you've hardly given it a fair trial, yet, have you. Too many other things getting in the way for it to work properly - stress, nutritional deficiencies, absorption problems, etc. It takes time for this things to work. Nothing is instant in the hormone world. And, your FT3 is so low at the moment that you are bound to feel bad. But, that is not necessarily the fault of the Erfa. As you are already on it, I would give it a while longer before you consider trying synthetic. Get all your other problems sorted out, first. No form of thyroid hormone replacement is going to work for you whilst you still have those nutritional deficiencies.

There is some discussion as to whether ADD really exists - the man that invented it says it doesn't! But, whatever you are experiencing, it is more than likely caused by the hypo. And I'm sure the marijuana does help. It helps a lot of things. It's very good for pain management, too. So, I wouldn't worry about that, if I were you. :)

Andyb1205 profile image
Andyb1205 in reply togreygoose

Thanks for the kind reply grey goose! Unfortunately I need to stay away from the green because I had an addiction problem for almost 7 years as it was a coping mechanism. And I had three intense de ja vu seizure triggers on it perhaps as result of anxiety, I should get my temporal lobe checked by a specialist.

Btw I'm not on Erfa right now I went off it to see my real TSH numbers foolishly, unfortunately I don't think I can go back on the Erfa because I messed up, while before I would get several month prescriptions renewals, because I went off it for 10 weeks now the doctor won't prescribe it. I have two choices, see a functional medicine doctor, or get a referral to an endo and convince him/her to put me on a T4/T3 combo. In the long term this seems to be more accessible too for me in my life. I'm in a tricky situation. Btw out of curiosity what are you personally taking right now?

greygoose profile image
greygoose in reply toAndyb1205

I have never been able to understand this business of going off the hormone to see the 'real' TSH. What does it matter what the TSH is? It's the FT3 that counts.

Well, if you really cannot get back on NDT, why not start with levo, and see how you do on that. That way you can assess your conversion and see just how bad it is - if it is bad. Then add in some T3 if necessary.

Myself, I'm on T3 only. I could not tolerate any form of T3.

Andyb1205 profile image
Andyb1205 in reply togreygoose

Also I do get acid reflux, less as I've been avoiding beef and McDonalds (still need my other red meat though aka bacon and sausage!) but don't take anything at all. Have gotten pain all over my chest, from the left to the mid area to the right, I hope it's all from simply acid reflux.

in reply toAndyb1205

I'm not so upbeat on the dope. I know someone who developed schizophrenia at college and smoking it seemed a likely cause. I also have a friend who typed up reports for a psychiatrist, she said there was a v close association.

NatChap profile image
NatChap in reply toAndyb1205

Hi Andyb1205, welcome to the group and sorry you have been feeling so unwell :-( greygoose has given good advice and I'm sure others will too, this is such a helpful group! With low B12 and Vit D it's no wonder you haven't felt the improvement from the erfa that you were hoping for. I would have said that your ferritin is a little low too but wait for someone more knowledgable to comment on that. Once your vitamin and mineral levels are up you will start to feel much better. You have to get the right balance and that takes time unfortunately but you are in the right place for advice :-)

Andyb1205 profile image
Andyb1205 in reply toNatChap

Ever since I found this website I've been getting spams in my email ever since and procrastinated to actually sign up. I'm glad I did! Feeling better already.

in reply toAndyb1205

Hi Andyb1205, You've found the best forum going for helpful people. Welcome to the start of getting your health improved. greygoose and NatChap are giving you sound advice. Don't beat yourself up, take one day at a time and one issue at a time. With regards to your low stomach acid are you in any pain from indigestion? are you burping a lot?

I have had terrible gut issues but they are getting resolved and I'm 80% better on that front. I had Helicobactor Pylori and a stomach ulcer and am awaiting the removal of my painful gall bladder. The H Pylori is gone thanks to eradication anti biotics. The ulcer has probably gone because it's not troubling me. I use 1 tablespoonful organic cider vinegar with the mother protien in. I took this with half a cup of still mineral water up to 3 times a day, drink it through a straw to protect your tooth enamel. I found it more beneficial to sip during my meals especially if eating meat. I hardly have to take it these days, it took a few weeks before it improved. I could not take Betaine because of the stomach ulcer. Aloe Vera/ pre and pro biotics/ lemon juice. These all helped and I continue to use the pre and pro biotics & Aloe Vera daily.

You need to take Vitamin K2 MK-7 with the Vitamin D3 it is ESSENTIAL!, I cannot stress that enough. This vitamin will put the Vitamin D and Calcium into your bones and not the blood. Magnesium is also good for your general well being. I was struggling to lose weight, but since being gluten free last September I have lost 32lbs this has been an absolute bonus to me because I wasn't expecting that. I leave 14 hours between my last evening meal and my breakfast, this helps your digestive system and with weight loss.

I wish you well Andy and hope things start improving pretty quickly for you. x

PS avoid any Soy x

humanbean profile image
humanbean

Since you mention having an abusive childhood, PTSD, anxiety, depression etc, I would guess that your cortisol levels are screwed up.

It isn't possible to tell from symptoms whether or not you have low or high cortisol because there is a lot of crossover in symptoms between the two states.

High cortisol will lower your TSH and will reduce your ability to convert from T4 to T3, and will make you feel dreadful.

Low cortisol I'm not so sure of (I've never had it), but I do know it will make you feel dreadful too.

If your unhealthy diet includes drinking a lot of alcohol, then you should try to cut down or stop because alcohol will drastically affect cortisol as well as depleting lots of your nutrients and damaging your stomach, possibly reducing your stomach acid further.

Cortisol levels are best measured by saliva test. Spit samples have to be given at (usually) 4 points during the day. The samples are frozen and sent back to the lab for testing.

Most people (in the UK, on this forum) use this test for cortisol measurement :

gdx.net/uk/product/adrenal-...

Read the additional resources as well so you know what to expect.

You can order saliva testing for cortisol in Canada. See this link and look at the Canada section :

stopthethyroidmadness.com/r...

humanbean profile image
humanbean

If you have just been toughing it out with your acid reflux and not treating it you are making a very big mistake. Even if you have low stomach acid, you will still have some, and when you have reflux it ends up in your esophagus (oesophagus). Stomach acid is hydrochloric acid, and your esophagus isn't designed to cope with it. It gets burned and scarred. You really, really need to avoid this because you also dramatically increase your risk of getting esophageal cancer.

It may sound insane, but the solution to acid reflux when it is caused by low stomach acid is to add acid to the stomach. Read the following links - the scdlifestyle links are fairly short and to the point, the Chris Kresser links are a much fuller explanation of low stomach acid :

scdlifestyle.com/2012/06/hy...

scdlifestyle.com/2012/03/3-...

scdlifestyle.com/2012/03/ho...

scdlifestyle.com/2013/10/4-...

Chris Kresser explains why acid reflux problems arise for most people in the first place. He doesn't mention hypothyroidism, but his method of dealing with the problem applies to hypo people.

1) chriskresser.com/what-every...

2) chriskresser.com/the-hidden...

3) chriskresser.com/more-evide...

4) chriskresser.com/how-your-a...

5) chriskresser.com/how-your-a...

6) chriskresser.com/get-rid-of...

galathea profile image
galathea

Youchecked this one out? mcgill.ca/channels/news/new... You donT need antibodies to have a wonky thyroid, you may have a faulty gene.....

You looked reasonable ok on 2 grains of ndt.....

Xx.

Andyb1205 profile image
Andyb1205 in reply togalathea

Very interesting! I just came across this on that genetic mutation.

"Further phenotypic findings in the family included macroorchidism and infertility in the uncle and mild neurological phenotypes in the affected males, such as hypotonia, delayed psychomotor development, clumsy behavior, and attention deficit disorder."

ncbi.nlm.nih.gov/m/pubmed/2...

I have felt I've had ADD my whole life which has worsened with increasing depression. I feel my tougher brother may also have thyroid problems, he used to be very skinny but now he's a little overweight at age 15. After a month of doing cardio at least 5 days a week (500-600 calories lost on treadmill each session) he's still at the same weigh! He's officially diagnosed with PDD-NOS (high functioning autism), and I have self diagnosed with Aspergers. That report interestingly mentioned hypotonia, as I mentioned I been skinny fat my whole life, despite doing Martial Arts as a kid and getting my black belt at age 15. I was also weaker, would get exhausted quicker and couldn't run as much, would have to struggle more with push-ups, was physically weaker as well. Now I can't do a single pushup and have had rotator cuff for three years in both shoulders and muscle weakness where my hands get tired easily from writing or typing, symptoms of carpal tunnel!

Anyways I will address rest of the things raised by you guys soon enough. I guess I've been toughing it out my whole life and well life was going well since I've always been a bright kid until my ADD hindered my success at McGill in Montreal and I went into a deep depression to now (raised by a narcissist mother and sociopath father that shaped my perfectionism). Of my health had taken a big dive two years before I went to McGill when I gained over 60 pounds!

Andyb1205 profile image
Andyb1205

I still need to go through the articles posted but I came across this. One of the causes noted here is prolonged acute stress.

"Long-term high stress can push cortisol high, and the latter pushes T4 to convert to the inactive Reverse T3, which causes hypothyroid symptoms. This is called Secondary Hypothyroidism and can be reversed once one moves away from the acute and chronic stress."

stopthethyroidmadness.com/c...

Chris Kresser had an article on similar topic here.

chriskresser.com/5-ways-tha...

It's all very confusing to me to be honest. What do I address first and how, cortisol problems or the thyroid? Or is it really mild congenital hypothyroidism? If only doctors did their job and we didn't have to bother researching this stuff on top of the daily stress of life.

galathea profile image
galathea in reply toAndyb1205

Here is an earlier post of mine.... You could start by measuring temperatures and see if adrenals are causing a problem.... healthunlocked.com/thyroidu...

Do you have anywhere that can test for a defective gene?

X.

Step at a time. Get your D levels up, some symptoms should resolve, Investigate why yr b12 is so low, check out Autoimmune Gastritis, which sometimes ends up as Pernicious Anaemia, there are three tests for that, two antbody tests and serum gastrin, the PA forum here is very good and will help you. The antibodies seem to come and go, so even if all three tests are negative you should suspect AIG and definitely get your b12 up to 1000, some more symptoms should resolve, and who knows, your thyroid results may be improved at the end of that. As others say, take a good b complex with the b12, Jarrow does one. Make sure that B5 in particular is taken because it may help both with cortisol and low stomach acid.

Your ferritin at 121 is plenty high.

Then take stock. It's easy to sink into a pile of research. You have two identified, serious and treatable conditions to start with, deal with those, don't feel overwhelmed.

Andyb1205 profile image
Andyb1205 in reply to

Thanks. I will get those tests done. Would a B complex from the counter suffice, such as Jamieson?

Also thought I'd mention my recent stool test.

Occult Blood Immunochemical 26, range < 50.

Stool, no bacteria found.

Also over the years my cholesterol has always been a little elevated (1-1.5 above range and doctors noted it's odd for my weight) but nothing serious.

My liver results have been slightly and a bit more elevated but nothing serious I hear. I wonder if those who drank as much as me had those numbers though.

B vitamin complex will help with the after effects of alcohol too. If you search this site for b complex recommended brands will come up. The over the counter ones tend to have cynocobalamin instead of methylcobalamin ... look at the labels carefully.

You are doing v well to keep off the v understandable crutches of alcohol and drugs while under such stress.

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