35 year old bloke here and I feel like I’m at the end of the road tonight. I’ve been feeling absolutely dreadful since at least 2018 - suffering with all of the classic symptoms; problems with weight maintenance, fatigue, brain fog, depression cold sensitivity, constipation, you name it.
This came on the back of dropping about 6 - 7 stone over the course of 2016 and 2017 (to around 10.5 stone) - all intentional through diet and training.
Despite this, blood tests have always argued against a case of hypothyroidism (with the following TSH recorded over the last few years:
2018 - 0.72
2019 - 1.9
2020 - 2.4
2021 (last week) - 4.7
I’ve only recently had T4 and T3 tested which came back as:
FT4 - 18.2 pmol/L [10.0 - 20.0]
T3 - 1.3 nmol/L [0.9 - 2.5]
Frustratingly, only T3 was tested, not FT3, however there appears to be a steady trend in TSH increasing, with FT4 in the upper echelons of the normal with T3 in the lower quadrant.
Given how I’ve been feeling, and what now feels like absolutely unstoppable and rapid weight gain no matter what I do, I was hoping I might be at least considered for treatment. However, both my endocrinologist and GP have told me that my results are normal. My GP wants to treat me for depression. I am depressed, but there’s cause and effect - the reason I feel how I do is three years of feeling awful and being unable to enjoy food!
I’m no doctor so I have to take their advice, but my own intuition based on what I’ve experienced is that I may have an issue converting T4 to FT3 effectively and am in need of a T4+T3 based treatment.
I just don’t know where to go next for help, which I need urgently now as I cannot go on living like this. Thoughts and advice welcome.
Thanks!
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JonnyA
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Thyroid results don’t appear to show a problem but .....
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
What’s your diet like, are you vegetarian or vegan?
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Any close family members have any autoimmune disease?
Ask GP to test vitamin levels and thyroid antibodies or likely to need to test privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
You are hypo when your TSH gets to 3, and in some countries you would be treated at that level. However, with an FT4 that high, you really don't want to take levo(T4).
To know if you have a conversion problem, you need to have your FT4 and FT3 tested at the same time. The T3 test gives you no useful information. So, you really do need private tests as SlowDragon suggested.
Also, there is not such thing as 'normal'. Don't be fooled by that. When a doctor says 'normal', all he means is 'in-range'. But, the ranges are so wide that they cannot be 'normal' all the way through. For thyroid and nutrients testing, it depends where in the range the result falls. So, rather than giving an opinion, it's best to give the actual numbers - resuts and ranges - when asking for help.
Were all tests done as early as possible in morning before eating or drinking anything other than water
Were Ft4 and T3 test results from same test that gave TSH 4.7
Obviously TSH of 4.7 suggests something is going on
What’s actual results and ranges on vitamin D, folate, ferritin and B12
NHS refuses to test TG antibodies if TPO aren’t high. Significant minority of Hashimoto’s patients only have high TG antibodies and struggle to get diagnosed
20% of Hashimoto's patients never have raised antibodies
I’m in Yorkshire. FT3 was requested however it seems the lab opted to do total T3 instead.
Other readings as follows:
Serum ferritin level 211 ug/L [10.0 - 322.0]
Serum vitamin B12 level 549 ng/L [211.0 - 911.0]
Serum folate level 8.3 ug/L [5.4 - 24.0]
Serum total 25-hydroxy vitamin D level 35 nmol/L [50.0 - 100.0]
Other than vitamin d being low (which is relatively unsurprising given I’ve been working from home for a year), the others seem to be fairly middle ground normal.
I am looking at getting another test done through a private clinic where it looks like they will test FT3 and TG antibodies.
"Frustratingly, only T3 was tested, not FT3, however there appears to be a steady trend in TSH increasing, with FT4 in the upper echelons of the normal with T3 in the lower quadrant"
Do you mean Total T3 was tested instead of Free T3?
Your TSH of last week at 4.7 is too high...when not on medication it should be close to 2 and when medicated, close to 1.
You need to have a full thyroid evaluation including antibodies ...see Slow Dragon's excellent advice
High FT4 with low FT3 indicates poor conversion unfortunately most medics don't look at this
If FT3 is falling due to poor conversion that could be raising your TSH
Generally speaking...
High hormones = low TSH
Low hormones = high TSH
Depression is a symptom of hypothyroidism, personally I would not want to take antidepressants which can mask rather than heal the cause
Suggest you test privately....results usually received in under a week so no long waits....post the results here, including all ranges, then experienced members can have a look and work out what is going on.
I suspect you may be right about poor conversion, in that case you first need to optimise your nutrients ( low nutrients affect conversion) if that makes no difference then you will need to request a referral to an endo again (a different one...most are diabetic rather than thyroid specialists)
The endo I saw could not understand my diagnostic test or those that followed....it turned out I had been both wrongly tested, diagnosed and medicated for 20 years!!
I didn't start to recover until I arrived here and with excellent support, personal reading and research found the answers that had eluded me for decades.
I understand your dilemma and hurry, but sadly there is no quick cure (think headache/paracetamol) and you need to be patient. It can take(many) months That is one of the pieces of valuable advice I was given when I set out on my journey.....without it I would probably have given up far too soon and stayed on square one!
Thanks DD. You’ve correctly identified my urgency - it’s affecting every corner of my life but most importantly that of my work and family.
Clearly I’m scratching around for some magical panacea in the form of a diagnosis and medication however I realise medicine is rarely this simple.
All I know is that I feel like I’ve lost the last 3 years of my life and not knowing how or when I’m likely to feel better is gradually driving me insane. It sounds like you’ve been there!
Serum ferritin level 211 ug/L [10.0 - 322.0] 64% of the way through the range
Serum vitamin B12 level 549 ng/L [211.0 - 911.0] 48% of the way through the range
Serum folate level 8.3 ug/L [5.4 - 24.0] 16% of the way through the range
Serum total 25-hydroxy vitamin D level 35 nmol/L [50.0 - 100.0]
Your ferritin is not bad. A slightly higher level (while staying well within range) might help, since you are male. But I would definitely not recommend supplementing.
Instead, try to incorporate more iron-rich foods into your diet. More info on this site :
Serum vitamin B12 - your result is just above the minimum that I would consider acceptable, but I feel better with my B12 being top of the range up to about 1000 ng/L.
Note that the Active B12 test is more informative than the serum B12 test.
Folate - In order to make use of B12 the body must have good supplies of folate. Optimal for folate is upper half of the range, so with your reference range I would suggest doubling your current level, and trying to get it into the range of about 15 - 24.
Vitamin D - To calculate your ideal supplementation dose for vitamin D, use this calculator :
A few points to bear in mind when supplementing vitamin D are :
1) Always take vitamin D3 not vitamin D2.
2) Vitamin D is fat soluble. Buy supplements which contain nothing other than a capsule containing oil and vitamin D3. Doctor's Best is a good make but there are quite a lot of others that are similar. An alternative which is popular with some people is mouth sprays, but they do contain far more fillers and excipients than the capsules I described.
3) There are loads of sites that sell vitamin D in many different doses and they aren't tremendously expensive compared to most supplements. (I use Amazon, but they aren't usually the cheapest they are just easy to use.)
4) There are co-factors required when taking vitamin D. Vitamin D increases absorption of calcium from the diet. You want that calcium to go into your bones and teeth, not end up lining your arteries. To make that happen you need good levels of magnesium and good levels of vitamin K2. You'll find loads of posts mentioning those two things. SeasideSusie mentions it quite often and her posts are always worth reading :
Wow! If I’m reading that correctly my result of 4.7 would put me in something like the 99th percentile of high TSH levels.
My experience so far from doctors / endocrinologists is “you think 4.7 is high, I had a man / woman in the other dat with a TSH of 50”. It’s a great way of diffusing the argument, but if that graph is accurate it somewhat makes a mockery of reference ranges.
I would have liked to know if the doctor/endo who said that actually diagnosed the person with a TSH of 50 with hypothyroidism. It is quite possible they didn't because the rules suggest that people have two high TSH results three months apart.
The other thing is that people don't all have the same experience of becoming hypothyroid.
Some people become hypothyroid quickly and can be diagnosed within, say, a year.
Some people become hypothyroid slowly. For example, I was told my thyroid was "borderline underactive" in about 1990. I got my first prescription for Levo in 2013, and even then the prescription was given with great reluctance. (My pituitary is damaged and is not good at producing TSH.)
The amount of damage done in each case will be quite different, I would think.
Hi. U have received great advice. My TSH was 4.0 in 2014 and I was diagnosed with depression. The anti depressants did not work. I was cold, couldn’t lose weight and had suicidal thoughts. I was declined an appt with an Endo and paid privately to see an Endo who diagnosed me with chronic fatigue. Do not doubt yourself. Go get the testing done and find the answers. Back yourself. You know you best. I’m sorry this is so hard
Thanks for all the responses guys - much appreciated. Any recommendations for any private clinics specialising in thyroid disease who might be able to help?
You are standing at the base of the mountain, and the guide (medical profession) has turned and walked away. I was where you are a few years ago. This brilliant supportive forum gave me the map, the tools and the knowledge to climb the mountain.
Get a private test (search the forum for private companies) and come back here with the results, and we can show you the best path for you.
Like any mountain, it takes a while to climb, but the view gets increasingly better as you plod forward, and it is so worth it! You are not alone on your journey - I had help and support every step of the way - and you have come to exactly the right place to start.
Hello JohnnyA, greater minds have covered all of the details here and it is excellent advice, think about it all then act upon it. I am putting in my two cents worth to let you know that many of us here (myself included) have been driven to desperation with slow creeping thyroid problems. I was going crazy with my decline in health and the lack of sensible communication with my (so called) endocrinologist. I felt as if I would only be alive for another two weeks and I desperately went round "knocking on the doors" of many doctors asking them if they had any enthusiasm for fixing a serious thyroid problem. I did find a solution via an unusual source - a voice out of an insurance office in one of the hospitals I walked into in a daze. I am just telling you this because you are not alone in how you feel. Getting the correct help is a long scary struggle but the advice you have been given here is a great start, get reading, get some private blood tests and keep searching for a sensible doctor, preferably one who will work with you even if s/he doesn't know the science of thyroid problems.
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