I am new here and this is my first post. I would be grateful for some help in understanding what is going on with my body please.
Diagnosis of:
High BP
Endometriosis
Adenomyosis
Underactive thyroid
Infertility - 13 yrs
Latest labs from July 23 show
TSH: 0.6 mIU/L (0.3-3.5)
FT4: 17.1
FT3: 3.8
Thyroid Peroidase <1.0 (<5.6 IU/mL)
Thyroglobulin Ab 85.6 (4<4.1) IU/ML
24 hr urine aldosterone renin ratio 79 (<70) when bloods tested came back "normal"
I have had a diagnosis of underactive thyroid for over 10 years which is treated with Levothyroxine. I am currently on 125mcg daily and I take it first thing in the morning on an empty stomach. All blood tests I take fasting first thing in the morning.
I went to my GP in Feb/March this year with extreme tiredness/fatigue. I thought it would either be my thyroid or iron levels (this is a common theme). My TSH came back slightly high at 4.6 even though medicated at 100mcg daily but my GP decided to test the antibodies as he was concerned that it was increasing even though medicated. As the time went on my hair was falling out in chunks, my eczema flared up, I was wither having to take naps or head to bed with 9-12hr sleeps at night. My brain fog was worse than when I had covid, my period cycles were only 14 days and my face was extremely swollen.
I was referred to an endocrinologist which took some with wait times who immediately increased to the 125mcg daily and then sent me for a load of bloods which includes the results above. During this process I have also been diagnosed with a leaky mitral valve and my medication was doubled and another tablet added daily. My symptoms have improved slightly although all the symptoms above are all still there.
My endocrinologist says that I am now sorted and he doesn't need to see me again. And has referred me to a cardiologist and hypertension specialist. I feel like he has increased my levo and sent me packing on my way.
I feel like I've now been pushed aside and the way I actually feel, not fully considered. I can't just take a day nap when I feel like it, I work full time. Do I need to go back and tell my endocrinologist how I am feeling? I'm not sure I feel confident in him now.
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Which brand levothyroxine is 100mcg and which brand is 25mcg tablet
Do you normally get same brand levothyroxine at each prescription
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
TSH: 0.6 mIU/L (0.3-3.5)
FT4: 17.1
FT3: 3.8
Please add ranges on these results and was test done as recommended
You need to retest thyroid levels 8-10 weeks after any dose change in levothyroxine (or brand change)
ESSENTIAL to test vitamin D, folate, ferritin and B12 levels
Hairloss strongly suggests low iron/ferritin
Request GP test vitamin levels including full iron panel test for anaemia
Thank you for your responses. Between work and needing to sleep, I find it difficult to keep up so sorry for the late reply. I also now live in Australia and it is a bit more difficult getting private bloods.
With my FT3 and FT4 he did not give me the ranges. They are listed directly after the TSH. Could it be the same range? The draw was some at the same time.
I have now been on the 125mcg of levo for about 8 weeks. Brand is Eutroxsig for both the 100mcg tablet and the 50mxg tablet that I have to cut it half. I have been on this brand for 4 years. I keep it refrigerated until I take out a strip ( I have to cut in half the strips to make sure not too many tablets are out).
I don't believe my endo tested for foliate, ferritin, vit d or B12. But O know my GP has at some point this year which probably isn't useful as results fluctuate.
Please can you add the lab range for your test, ranges vary between labs and are always needed to interpret accurately.
By most ranges your FT4 is not high & your FT3 the active thyroid hormone is looking very low.
Doctor look at TSH & once values are in range think their job is done. Most feel best when FT4 is top 3rd of range & FT3 at least half way. The TSH is unreliable and is many cases will drop low before FT4 & FT3 are adequate.
Was your replacement dose taken prior to sample? If you had it might show false high FT4.
Most hypothyroidism is autoimmune. TG antibodies confirm this. TPO appear negative but antibodies fluctuate and the cause & levels of antibodies doesn’t affect treatment.
I think you need to organise a test for key nutrients (privately is GP / specialist won’t agree.
Poor ferritin, folate,B12 & Vitamin D can affect conversion. When they are optimal, not just in range which is what doctors look for, this can help Levo work well & convert to T3.
An approximate final levo dose is 1.6mcg of levo per 1kg body weight. This is a guide, some need less, some need more & always needs to be adjusted by 25mcg at a time. Does your 125mcg levo calculate to the right level?
You're right, the way you feel is not considered at all. They do not care one jot how you feel. All they care about is the lab test results - and they don't even know how to interpret those correctly!
An endo is rarely the best person to see about a thyroid condition because 99.9% of them are diabetes specialists who know next to nothing about thyroid. The best thing you can do is learn about your condition and advocat for yourself - or even self-treat. Did you know you have Hashi's? Did the endo explain about it?
Do you have the ranges (reference intervals) for those results? They are usually in brackets after the result. Without them we cannot interpret those results, but that FT3 looks pretty low. And that would be why you still have symptoms. T3 is the active thyroid hormone (T4 is basically a storage hormone that doesn't do much until it is converted into T3) that is needed by every single cell in your body to function correctly. So, if there's not enough to go round, that's what causes symptoms. And the symptoms can affect every part of your body, including your heart and your brain. High blood pressure and infertility are also hypo symptoms.
Thank you for your welcome too. And for all of the information.
Yes he casually dropped in I have hashimotos and said I had probably had it all my life without even explaining what he meant and I was in shock, fatigued and with the brain fog, I didn't get to ask what he meant.
Well, basically, Hashi's is an autoimmune disease, where your immune system slowly destroys your thyroid, mistaking it for the enemy.
During the attack, the dying cells deposit their stock of thyroid hormone into the blood, causing your levels of FT4 and FT3 to rise sharply, and your TSH to drop. So, don't be surprised if your levels jump around on the same dose. Doctors do not understand Hashi's so want to slash your dose. Don't let them. It has nothing to do with your dose and the high hormone levels will eventually drop by themselves. And, when they do, you are going to need your full dose again.
ESSENTIAL that vitamin levels are optimal as well as thyroid
Your Ft3 looks extremely low (need range to confirm)
Low Ft3 results in low vitamin levels
Low vitamin levels results in poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
Low iron/ferritin is linked to increased risk of miscarriage too
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
When I am next at my gp I will ask for the full results and report back here. With the ranges.
I may also book in with my gp to see if he will do any bloods. I am just grateful that he picked up and did the initial tests.
I actually eat pretty healthy too, keeping it low carb and away from a lot of wheat and gluten and have done for around 2 years. My gp tested for coeliac but said it was clear. So now seeing your reply above, I would need to consume gluten to test correctly. My gp knew my diet too. So I could in fact have an incorrect result.
I am feeling that my gp and endo really don't listen to me and do not give the correct advice to get the best of the tests ans to understand what is actually going on.
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