My Story with Hashimoto'S and Delusional PMT - Thyroid UK

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My Story with Hashimoto'S and Delusional PMT

MiaLemon profile image
MiaLemon
•8 Replies

Hello, first of all it was good to have found this group. 🙂

Sometimes I feel alone and crazy, because I go for a test and it's "Okay."

I'm from Portugal and I take Eutirox 112mg. I was diagnosed with Hashimoto's in 2018, but the test values were not high enough to take medication. (TSH, T4 and T3 were "normal") Before that in 2016 when I stopped taking the pill, the first time, I had subclinical Hypothyroidism.

Until in September 2022 the bomb broke TSH 91.5 (0.400-6) T4 0.3 (0.700-1.8).

It was very difficult to realize that it was going to happen, because I had all the symptoms of hyperthyroidism before this bomb appeared. At this time I had hair loss, poor memory, and constant tiredness.

Just before the diagnosis, I would say in the same month I became even more tired, but I continued, with great effort, to do my routine and I had a job that was very demanding, etc. The following months were horrible, I tried to have a healthy routine (going to the gym), but I was so tired that I just wanted to sleep. I endured everything, I became frustrated and increasingly weighed down. Despite being medicated, I gained weight. I reached Burnout! That leaves a mark on me to this day. Some people at work didn't understand what I was going through. Now I always take the medication, trying to take it 30 minutes to 1 hour before breakfast. I have my days, days when I'm fine, other days that are terrible. I've been through so many periods where I tried to start a healthy life again and go to the gym and it went wrong, other times it went well. Everything seems random and I can't know myself and my limits. What has scared me a lot now is that in some menstrual cycles I go crazy the week before. I have intense repetitive thoughts, I feel like no one likes me, I get caught up in details that I usually don't. I'm aware that it's too much and I can't control it, it's like someone is taking over my mind and I just want them to go away quickly. Does anyone else feel this? What are your menstrual cycles like? Anyone else have weird stories? My values ​​05/18 TSH 2.2 mIU/L (0.400 - 6) 32.1% Free T4 (fT4) 1.2 pmol/L (0.700 - 1.8) 45.5% Thyroglobulin Antibodies (TgAb) 37 IU/mL (≤ 34) Thyroid Peroxidase Antibodies (TPO) 211 IU/mL (≤ 115) My 9/04 values ​​are TSH 1.89 mIU/L (0.35 - 4.94) 33.6% Free T4 (fT4) 1.04 pmol/L (0.70 - 1.48) 43.6% Free T3 (fT3) 2.69 pmol/L (1.58 - 3.91) 47.6% T4:T3 Ratio 0.387 

A hug to everyone

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humanbean profile image
humanbean

I was diagnosed with Hashimoto's in 2018, but the test values were not high enough to take medication. (TSH, T4 and T3 were "normal")

It would be in your interests to get the historical results and reference ranges from your medical records.

I wouldn't be surprised if your TSH, T4 and T3 were nowhere near normal. Or you might find that T4 and T3 weren't even tested.

And the doctors may have been waiting for your TSH to reach some particular level. In the UK this level, which doctors think means hypothyroidism is "real" and "deserves" treatment, is TSH at a level of 10+.

Having copies of your older results won't change anything now, but it might help to explain your own life and your own experiences to you. Some people are brought up to believe that their health problems are their own fault, because they are just lazy and/or mad. Knowing your historical results might help you to rid yourself of those thoughts (if you have them).

...

I've pasted in your results again because the way you've shown them in your original post makes them hard to read. I found your dates confusing. Personally, I prefer them to be written out in full.

05/18 18th May? Which year?

18th May 2024

TSH 2.2 mIU/L (0.400 - 6) 32.1%

Free T4 (fT4) 1.2 pmol/L (0.700 - 1.8) 45.5%

Thyroglobulin Antibodies (TgAb) 37 IU/mL (≤ 34) Over range

Thyroid Peroxidase Antibodies (TPO) 211 IU/mL (≤ 115) Over range

9/04 Is this 4th September or 9th April? Which year?

9th April 2024

TSH 1.89 mIU/L (0.35 - 4.94) 33.6%

Free T4 (fT4) 1.04 pmol/L (0.70 - 1.48) 43.6%

Free T3 (fT3) 2.69 pmol/L (1.58 - 3.91) 47.6%

T4:T3 Ratio 0.387 

The antibody results both confirm that you have autoimmune hypothyroidism. This could be Hashimoto's Thyroiditis or Ord's Thyroiditis

en.wikipedia.org/wiki/Hashi...

en.wikipedia.org/wiki/Ord%2...

To make it simple -

Hashi's presents as hypothyroidism with a goitre or enlarged thyroid.

Ord's presents as hypothyroidism without a goitre. The thyroid atrophies/shrivels up.

Hashi's can sometimes present in the early stages as mild hyperthyroidism before the patient becomes hypothyroid. I'm not sure if Ord's does as well. Both forms of hypothyroidism eventually end up destroying the thyroid but it could take many years.

...

Untreated or under-treated hypothyroidism can have catastrophic effects on the sufferer.

This is one of them :

en.wikipedia.org/wiki/Myxed...

A very, very old article (published in the British Medical Journal in 1949) about Myxedematous Madness is this one - but well worth reading at least once, in my opinion.

ncbi.nlm.nih.gov/pmc/articl...

...

Another major issue with untreated or under-treated hypothyroidism is the fact that many tissues in the body "dry up". This includes a reduction in stomach acid, which then leads to poor absorption of nutrients from the diet. Doctors seem to consider low nutrients as a trivial problem because of their belief that in a first world country everybody has enough to eat so vitamins and minerals are never or are unlikely to be low. They also believe that low nutrients, as long as results are in range, do not cause symptoms. Many of us would disagree.

As an example :

Patient A has ferritin (iron stores) measured at a level of 15 Range is (15 - 150)

Patient B has a result of 82 with the same range i.e. result is mid-range.

Patient C has a result of 150 with the same range.

There are many doctors who think that these patients are perfectly well because their results are all in range. But in reality :

Patient B is likely to feel best.

Patient A is likely to feel worst.

...

We often say on this forum that nutrient levels will make most patients feel best if levels of the various nutrients are optimal. Usually we suggest that people have the following tested :

Serum (or Total) Vitamin B12 - Optimal is upper half of the range. Minimal level is 500 ng/L. Some people aim for a result of 1000 ng/L.

perniciousanemia.org/b12/le...

perniciousanemia.org/b12/le...

Active Vitamin B12 - Optimal is 100+ pmol/L. Minimal level is 70 pmol/L.

Note that Active B12 is a better test than Serum B12.

There are four different forms of B12 supplement available. Personally I choose to use methylcobalamin, but some people prefer one of the other forms.

Choosing a supplement for B12 : perniciousanemia.org/b12/fo...

...

Folate - Optimal is upper half of the range if the range has a lower and an upper level. If there is no upper level to the range then personally I aim for a result of about 20 micrograms/L.

To choose a folate supplement :

chriskresser.com/folate-vs-...

And for more info :

takecareof.com/articles/ben...

Personally I always use methylfolate. I avoid folic acid like the plague.

...

Vitamin D - Optimal is usually given as either 100 - 150 nmol/L or 125 nmol/L. Personally I'm happy if my result is 100 nmol/L.

If your Vitamin D tests use ng/mL as the unit of measurement then optimal is 40 - 60 ng/mL.

To convert from one unit to the other:

grassrootshealth.net/?post_...

Another useful link when buying vitamin D supplements:

grassrootshealth.net/projec...

And some people like this for calculating their supplement dose, some don't :

grassrootshealth.net/projec...

Another source of info :

healthunlocked.com/thyroidu...

Note that Vitamin D3 is a better supplement than Vitamin D2.

Most Vitamin D3 supplements are sourced from animals e.g from lanolin from sheep's wool is a very common one. If you are vegan or vegetarian then there are D3 supplements available which are made from lichen.

...

Serum Iron and Ferritin (Iron Stores) - I've mentioned this already further up. Remember that ferritin and serum iron are not exactly the same thing, and one can be high while the other is low.

One possible problem occurs when people take iron supplements because their ferritin is low, but they don't know that their serum iron is already high and supplements make this worse. A very high level of iron in the blood makes people feel very ill. The body can't get rid of excess iron very easily. Menstruation obviously causes the loss of iron. Defecation loses a tiny amount of iron as well. The best way of dealing with iron/ferritin is to have an iron panel done, once or twice a year.

A commonly used iron panel on this forum, for people living in the UK, tests :

CRP (a marker of inflammation and/or infection)

Serum Iron

TIBC (Total Iron Binding Capacity)

Transferrin Saturation

Ferritin

MiaLemon profile image
MiaLemon in reply to humanbean

Thank you very much for answering me. At the moment I am medicated with Eutirox 112mg. In 2022, my Hypothyroidism come severe with TSH 91 (max.6). Sorry for the formatting of the text but I'm writing on my cell phone

humanbean profile image
humanbean

I forgot to mention...

In my own experience having low iron and ferritin badly affects my mental health and I become extremely depressed and/or anxious.

Other people might be more affected by low B12 and/or low folate and/or low vitamin D.

In thyroid terms too high or too low Free T4 and too high or too low Free T3 are the problems that affect mental health. Doctors tell people they need to raise or lower their TSH. But TSH doesn't directly affect mental health. The most important one to know and get right for the patient is Free T3.

MiaLemon profile image
MiaLemon in reply to humanbean

This values are from 2024. 1st 18 May and 9th April.

RuthieRuth profile image
RuthieRuth

hi Mia Lemon. Sorry you're going through this - I know how it feels! I had terrible PMDD (intensely irritable, couldn't sleep, exhausted, even the birds singing was too noisy for me then day one boom I'm fine again).

Two things helped for me:

1. I get an off label prescription for an SSRI which helps immensely - it's impact is almost instant. Suggest you ask your GP about this. I only take it when I feel symptoms of PMDD as personally prefer to keep my medication as little as possible. And

2. Since increasing my dose of levothyroxine it seems much less often that I need to take the SSRI, so maybe it was too little thyroid hormone all along.

Definitely don't suffer in silence here! You can get help for this. Best of luck

sparkly profile image
sparkly

Have a read up on progesterone therapy for pmdd.I don't personally suffer with severe pmt anymore but have read some ladies take high dose of micronised/ body identical progesterone to help relieve symptoms.

I hope you find what works for you

Bethea-Alice profile image
Bethea-Alice

I recently looked into natural treatments for premenstrual dysphoric disorder as my daughter in law has started suffering similar symptoms. Found out that magnesium (glycinate is well absorbed) and methylated B complex, particularly B6, can bring relief. A Google search will bring up quite a few studies you might find helpful. I wish you all the very best and hope you can get some relief soon.

JUUJOO profile image
JUUJOO

I had pmdd previously and it was terrible. I tried various anti depressants which made things worse . I was referred to a gynaecologist who put me on a type of contraceptive pill that was similar to hrt. It worked a treat. Looking back I think the symptoms were definitely early menopause but as I was late 30's early 40's no one thought about it. Even though I'd reported my mum had early menopause at 42.More recent years, after being diagnosed with Graves and having Rai, taking thyroxine , as well as adding in hrt, my thyroid levels absolutely 100% effect how I feel before my period. It has taken roughly 36 months to get my levels better and as a result my pmdd is now more PMT, more normal, more manageable. I've recently added in T3 and lowered thyroxine slightly and the week before my period I've started to feel the rage again. Now my body had adjusted to the changes in dose, the rage has hone. So in my experience your thyroid levels definitely effect your mood. Good luck !

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