Having hypo symptoms: I'm hoping someone can help... - Thyroid UK

Thyroid UK

137,936 members161,765 posts

Having hypo symptoms

Pixie_1 profile image
15 Replies

I'm hoping someone can help. I am not getting on well with the Levothyroxine - it makes my symptoms worse and not better. I went to the GP 3 times last week to talk about my results and that I feel no benefit on the Levothyroxine - 2 of the GPs asked me if everything at home was ok, which I knew they were. :(

My symptoms are mostly physical ones and the last GP I saw said that my symptoms could be from mental distress. I've had these symptoms for 4 years but diagnosed hypo a year ago. I am on 150mcg and the GP will not raise my dose of Levothyroxine because he said my Free T3 looks optimal and my TSH is now under range which the GP is now worried about.

The GP has put me on Ferrous Fumarate 210mg 1 tablet 3 times a day because my iron is low.

My symptoms don't suggest I'm overtreated but the opposite and they're causing me a lot of worry. I didn't take the Levothyroxine 24 hours before the test; I took it straight after I got home from the blood draw.

1. The front of my neck feels irritated as if it's itchy but the itchiness is inside my neck like it's fizzy. Ultrasound has

confirmed the thyroid is enlarged but the lobes are both the same size and shape.

2. The blood drains out of my hands and feet within minutes and I get very bad pins and needles.

3. I get dizzy upon standing from sitting/lying down and I get a whoosing sound through my ears into my head.

4. I don't have bowel movements for a few days and one day I get a sudden urge to go and it comes out hard.

5. I can sleep for about 13 hours a day and I get tired out easily.

6. I have stopped sweating.

7. The skin on my fingers, face and arms is dry so I use Nivea and organic products to help with this but the dry skin has not gone away.

8. My periods used to be heavy but they are now much lighter and are black.

9. I have got spots all over my face.

10. I have got new hair growing on my face and I am always shaving it off. My armpit and leg hair grows back quickly.

11. I gain weight very easily and I have gained half a stone in a few days.

12. My body temperature is 33.4 degrees Celsius when I wake up.

If anyone could help interpret my results and why I am feeling hypo and not overtreated because of my TSH being so low I would be very grateful.

Thank you for reading.

September 2015 - Thyroid Function Tests

! Serum TSH Level - Overtreated, reduce dose of thyroid hormone replacement and repeat in six weeks: 0.01mIU/L (0.20-4.20)

! Free T4 Level - Overtreated, reduce dose of thyroid hormone replacement and repeat in six weeks: 28.5pmol/L (12-22)

Free T3 Level - Normal no action: 5.4pmol/L (3.9-6.8)

!Thyroid Peroxidase Antibodies - Raised level: 275iu/L (<34)

!Thyroglobulin Antibodies - Raised level: 348.3iu/L (<100)

Serum ferritin - Low iron: 15ng/mL (15-400)

Serum folate - Normal no action: 5.2ng/mL (4.5-18.7)

Serum Vitamin B12 - Normal no action: 382pg/mL (190-900)

25-OH-hydroxyvitamin D - Suboptimal Vitamin D. Could benefit from supplementation: 72nmol/L (>75)

June 2015 - Thyroid Function Tests

Serum TSH Level - Normal no action: 1.42mIU/L (0.20-4.20)

Free T4 Level - Normal no action: 13.4pmol/L (12-22)

Free T3 Level - Normal no action: 4.2pmol/L (3.9-6.8)

April 2015 - Thyroid Function Tests

!Serum TSH Level - Abnormal, increase dose of thyroid hormone replacement and repeat in six weeks: 6.03mIU/L (0.20-4.20)

Free T4 Level - Normal no action: 16.4pmol/L (12-22)

Free T3 Level - Normal no action: 4.5pmol/L (3.9-6.8)

Cortisol - Normal no action: 344nmol/L (140-700)

Midstream Urine Sample - Antimicrobial therapy: Trimethoprim

Microscopy result - White cells: 11-50/cm, Red cells: less than 10/cm, Epithelial cells: few

December 2014 - Thyroid Function Tests

Serum TSH Level - Normal no action: 2.71mIU/L (0.20-4.20)

Free T4 Level - Normal no action: 14.2pmol/L (12-22)

Free T3 Level - Normal no action: 4.1pmol/L (3.9-6.8)

!Thyroid Peroxidase Antibodies - Raised level: 40iu/L (<34)

Serum Selenium Level - Normal no action: 0.97umol/L (0.89-1.65)

Serum Tissue Transglutaminase - Normal no action: <2U/mL (<10)

Serum Zinc Level - Normal no action: 15umol/L (11-23)

Serum Calcium - Normal no action: 2.32mmol/L (2.20-2.60)

Serum Adjusted Calcium conc - Normal no action: 2.30mmol/L (2.20-2.60)

Serum Albumin - Normal no action: 42g/L (35-50)

Serum Magnesium Level - Normal no action: 0.83mmol/L (0.70-1.00)

Fertility tests

Day of Cycle/Therapy: 3 days

Serum FSH Level - Normal no action: 7.2IU/L (Follicular - 3.5-12.5) (Luteal - 1.7-7.7)

Serum LH Level - Normal no action: 5.8IU/L (Follicular - 2.4-12.6) (Luteal - 1.0-11.4)

Plasma Viscosity - High: 1.73mPa.s (1.50-1.72)

August 2014 - Thyroid Function Tests

!Serum TSH Level - Abnormal contact patient and repeat in six weeks to adjust dose if symptomatic: 33mIU/L (0.20-4.20)

!Free T4 Level - Abnormal contact patient and repeat in six weeks to adjust dose if symptomatic: 8.2pmol/L (12-22)

Free T3 Level - Normal no action: 4pmol/L (3.9-6.8)

(I am under the care of an endocrinologist)

Written by
Pixie_1 profile image
Pixie_1
To view profiles and participate in discussions please or .
Read more about...
15 Replies
shaws profile image
shawsAdministrator

I'm sorry you are not feeling well. Mental Distress? your doctor may be right but the reason is probably levothyroxine and not to do with your personal life. That's the problem when they don't know clinical

symptoms and rely only upon the TSH to diagnose.

Some people just cannot get well on levothyroxine. As soon as I had T3 added to my levothyroxine I was much improved. I am fine now on T3 only and would never ever take levothyroxine again.

On the other hand some do get well on levo but they wont be on the internet looking for answers.

Tell the doctor not to worry about a low or suppressed TSH as Dr Toft who was President of the British Thyroid Association, says some of us do need that to feel well. He even says that some of us might need some T3 added.

If you email louise.warvill@thyroiduk.org for a copy of the Pulse Online article. (some GPs pay no attention to it but some do). This is a link re adding T3 to T4 if your GP is agreeable. It is up-to-date research:

tpauk.com/images/docs/reduc...

Cursor to Page 80 and it's the first para on the l/hand side.

hormonerestoration.com/

Pixie_1 profile image
Pixie_1 in reply to shaws

Thank you Shaws. I think my endocrinologist is doing something with my treatment when I next see her but the first appointment I had with her left me with more questions than answers. She told me I was clinically euthyroid.

shaws profile image
shawsAdministrator in reply to Pixie_1

Clinically euthyroid means you have no symptoms and feel well. I think she means you are somewhere in the 'normal' range, but that's not quite the same thing.

Jazzw profile image
Jazzw

As if problems at home would cause that massive surge in thyroid hormone! What a daft thing to suggest!

It looks very much like a Hashi's flare, Pixie - to so rapidly have so much FT4 sloshing about. You poor thing, no wonder you feel awful xx

shaws profile image
shawsAdministrator

Adjusting levo according to the TSH alone isn't a good idea. Go to the date July 15, 2006 to read the explanation:-

web.archive.org/web/2010103...

liverish profile image
liverish

hi Pixie, like Jazzw said, Hashi flare sounds likely. My poor GP may not know much about T3 or NDT (being a straight Levo kind of guy) but he was at least able to warn me that I had two things going on, low thyroid which they could treat, and the Hashimotos which they couldn't. He explained that irrespective of the thyroid levels the Hashis makes you ill when you are having an attack and that it really affects hormone levels unpredictably. Shaws advice is really worth taking too, I wish you better.

Pixie_1 profile image
Pixie_1 in reply to liverish

Thank you Liverish. I see my endocrinologist next week and I had a list of symptoms with me. I started to go through the list of them with her and I think I was only on the 4th one or so and she then said "ok, so what I think we should do is this..." and because she said that I then felt unable to continue reading through my list of symptoms. I don't feel very confident in her ability I have to admit. :(

Heloise profile image
Heloise

Hi Pixie, so many, many symptoms. The thyroxine doesn't seem to be doing anything for you and I have the feeling your adrenals may be the reason. Normally your T4 needs iron and cortisol to become FT3 and as low as they both are you seem to be converting. But the T3 doesn't seem to be active or your temperature would be higher. Also B12 and folate are very low. If you have time to watch a video. Dr. Bergman explains the relationship between the thyroid and adrenals and I think you will also understand how other hormones are involved as well.

youtube.com/watch?v=T_Re4ja...

Pixie_1 profile image
Pixie_1 in reply to Heloise

Thank you Heloise. I have ordered a 24 adrenal test for cortisol and DHEA to check for what the endocrinologist has missed.

Heloise profile image
Heloise in reply to Pixie_1

That's good and will give more information to go on. Even with that, though, it's hard to tell if it has been going downward or is improving, still, each of the four will give you an idea of what's going on at this time. Adrenals have several functions and you have to find out if they need stimulating or a rest. In any event, they need magnesium and use a lot when stressed and also vitamin C.

If you watch the video you'll see they use cholesterol to make sex hormones as well as the steroids. It seems many symptoms can crop up when the adrenals are exhausted but I've also read they can heal rather quickly given the right support.

Here are a couple of short videos about the antibodies you have.

youtube.com/watch?v=IIX2Z_i...

youtube.com/watch?v=Z5SaM0R...

greygoose profile image
greygoose

Your T3 is not optimal. It's only just mid-range. Most people need it up the top of the range to feel well. Besides, 'optimal' can't be seen, it's felt. It's when all your symptoms have gone, and yours haven't. And the problem is, you're not converting very well. And keep increasing the dose of T4 won't help very much.

That could be due to your low ferritin, and it's good that he's treating that. But what about your B12? It's way, way too low. It should be at least above 500, but optimal is 1000. So, that needs supplementing - 5000 mcg sublingual methylcobalamin daily, with a B complex to keep the Bs balanced. Your low B12 probably accounts for several of your symptoms. You'll feel much better once it's optimised.

It would also be a good idea to get your vit D tested, if you can.

That might, or might not, help your conversion. But it would be much better if you could add in a little T3. It's very doubtful that you'd get that from your doctor, he's not very knowledgeable, is he. But you might get it from an endo - ask to be referred to one of your choice. If not, you could buy your own and take that. :)

Pixie_1 profile image
Pixie_1 in reply to greygoose

Thank you greygoose. My Vitamin D is said to be in range. 72nmol/L (>75) I am under the care of an endocrinologist but I left the appointment with her with more questions than answers. I presented to her a list of symptoms and when I got to the 4th one she then said "ok, I think we should do this..." and because she said that I felt unable to carry on explaining how I felt.

greygoose profile image
greygoose in reply to Pixie_1

Yes, well, the problem is they're not interested in our symptoms because they Don't know what they are supposed to be. I doubt she would recognise a B12 deficiency symptom is she had it herself. That is why we have to learn as much as we can and tell them, rather than them telling us. Because they Don't know. We have to be our own advocats - and sometimes even treat ourselves. You're going to have to treat your own B12 deficiency, as I said above, because it is giving you symptoms - and some of them could be irreversable.

For your constipation, you could take about 350 mcg magnesium, with a little zinc. That's much better than any medication the doctor will give you (they Don't know about magnesium) and you're probably magnesium deficient, anyway.

Your vit D is,'t in range, it should be higher than 75 - 72 is lower than 75 - they can't even do the maths. I once had a doctor that told me that a TSH of 9.5 was 'good enough'. Well, good enough isn't good enough. You would probably feel a bit better if your vit D was higher.

Actually, I think you should leave that endo for good. She doesn't really know what she's doing. Either try and find a better one, or go it alone. That's what I did. And I've never regretted it. :)

Pixie_1 profile image
Pixie_1 in reply to greygoose

I think a better endo is better. Thank you. :)

greygoose profile image
greygoose in reply to Pixie_1

:)

You may also like...

Hypo post RAI still have symptoms - help with blood results

67.6 nmol/L (50-175) TSH 0.732 ml U/L (0.27-4.2) Free T3 3.7 pmol/L (3.1-6.8) Free Thyroxine 18.5...

Why have my hypo symptoms returned despite TSH dropping below range?

a week) TSH 0.03 mu/L (0.27 - 4.2) Abnormal (it was 0.04 last week) T4 24.3 (12-22) Abnormal (it...

Still having hypo symptoms

vitamin.and minerals and these are all at optimum levels. Despite being on 250mcg of thyroxine per...

hypo symptoms but bloods say otherwise...

thank you Thyroid Function THYROID STIMULATING HORMONE 2.39 mIU/L 0.27 - 4.20 FREE THYROXINE

Hypo symptoms but tests are normal

reference range was 9.0-19.1. These tests say that my thyroid is normal but I have so many hypo...