Thyroid issues: Good morning! I am struggling to... - Thyroid UK

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Thyroid issues

Felly35
Felly35

Good morning! I am struggling to find some answers about my health as all I can hear from my GP is all blood test are in the range. The most recent blood test I have had done was in April 2018 and the results are as follow:

TSH 2.36 mu/L (0.35-5.50mu/L)

free T4 13 pmol/L (9.00-22.70pmol/L)

free T3 4.2 pmol/L (3.50-6.50pmol/L)

Thyroid peroxidase Ab 117 iu/mL (0.00-60.00iu/mL)

vit D 99 nmol/L

It all started few years back when I knew something was wrong as I was very tired and a lot of digestive issues and migraines but the doctors blamed everything on stress and they put me on antidepressants. After a while my joints start to hurt and I was sent to Rheumatology and diagnosed me with Undifferentiated Connective Tissue Disease because on my blood test it showed ANA positive and put me on hydroxychloroquine which I have stopped after a year as I was loosing a lot of my hair and not feeling any better. I have had a private scan for my thyroid and I was told that I have thyroiditis but no medication. I was sent by my GP to Endocrinology but they discharge as my blood test are in the range.

I am on no medication at the moment and gluten free for over 2 years. I take some supplements Vitamin D, Omega 3, Selenium, Probiotics, Digestive Enzyme (as I suffer from severe constipation). It is all very confusing for me. From being a healthy person to turn in someone who is very tired and not being able to be keen in doing things which I used to love it is a nightmare. I just want my health back to be able to enjoy my family, my kids :(

I hope someone can give me some advice on what to do or where to go. Thank you

19 Replies
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SlowDragon
SlowDragonAdministrator

Your TPO antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

As well as vitamin D (which is good) also need to test folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

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. See you are already strictly gluten free which is good

Dairy is second most common.

thyroidpharmacist.com/artic...

Your bloods may be in range but FT4 is very low in range

FT3 low

But medics are just looking at TSH.

Getting other vitamins tested and optimal is first step.

Magnesium supplements can help with constipation and many with Hashimoto's and/or gluten free have low magnesium

Calm vitality magnesium powder is cheap and easy to use. Start with small dose and build up. Too much can cause diarrhoea

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Felly35
Felly35 in reply to SlowDragon

Hi SlowDragon

I have repeated my blood test (on fasting) through NHS and the only ones I could do are:

Free T3: 4.4pmol/L (3.50-6.50pmol/L)

Free T4: 17.2pmol/L (9.00-22.70pmol/L)

TSH: 2.29mu/L (0.35-5.50mu/L)

Feritin: 102ug/L (10.00-291.00ug/L)

Folate: 12.1ug/L (2.80-19.00ug/L)

Iron: 23umol/L (6.00-35.00umol/L)

I am still waiting for TPO but I am sure it is raised as it always is. I need to find somewhere private to have TG thyroid antibodies done as NHS will not do that and the rest. I did take Biotin a day before the test. I didn't know I should have stopped it 2-3 days before. I have seen some posts after :( I will repeat that as well.

They have done my potassium and it looks like this is raised but I have no idea what that means. They've just told me I have to repeat that which I will do probably next week.

Let me know what you think about these blood test. I need to find a way to have my energy levels back. I've started crying when I went to GP and ask them to repeat my blood test as they looked at me like I was crazy. They told me again maybe it is just anxiety or depression but I've just enough of going there and not be understood :( Thank you x

SlowDragon
SlowDragonAdministrator in reply to Felly35

You will struggle to get anyone to treat with blood test like this

TSH is well within range.

FT4 is high in range

FT3 pretty good

The only option at moment is likely to look at addressing vitamins and improving gut

Are you supplementing magnesium as well as vitamin D?

Magnesium citrate is very good for constipation

Many of us use Calm vitality magnesium powder. Cheap and easy to use.

Don't fret about the biotin. But remember next time

GP unlikely to want to retest for a year. But would recommend getting retested privately in 3-6 months

Perhaps trying strictly dairy free is your next step

Or adding good probiotic daily and/or fermented foods like kefir

Watching the Thyroid Secret, available on YouTube I think, may be helpful

Felly35
Felly35 in reply to SlowDragon

Thank you so much for your advice.

I am taking Calm daily now and because the sun was out these days I’ve stopped taking Vit D but usually I do take during winter.

I will definitely remember next time about Biotin.

I have also decide to be dairy free now. I am trying a bit of Paleo diet and AIP diet, I will see how this will go.

I will look for Thyroid Secret. I have also started reading Amy Myers book. I have few books ordered but hard to finish them

Hi SlowDragon

Thank you so much for your detailed reply. I will try to get the rest tested and hopefully the thyroid again on fasting. I’ve always done my blood test during the day after breakfast. No one has ever told me to have them done on fasting. This exactly what happens with my gut. Now it is better because I am gluten free. I have tried to quit dairy but it was so hard but I’m trying to buy them organic.

As soon as I will have the results for my blood test I will post them. Do you think I should try to find a different GP? Should I try to find an holistic doctor? I just need to see someone who understands more this disease. Best regards

NatChap
NatChap in reply to Felly35

Unfortunately I don't a different gp will make any difference. Even endocrinologists who are supposedly the experts, would probably say your tests are in range so no treatment needed.

Take SlowDragons advice and take things from there x

Felly35
Felly35 in reply to NatChap

Thank you NatChap.

SlowDragon
SlowDragonAdministrator in reply to Felly35

Dairy - you could try lactose free milk or A2 milk

Or many with Hashimoto’s react to casein only in cows milk

So sheep or goat is ok

Best I guess to cut out completely for week and then try goat milk or similar

Yes I have not cut dairy. But have other Hashi friends that have and they manage

Makes eating out pretty difficult but not impossible

Some coconut milk is pretty good

TSH has quite significant daily variation. Highest early in morning, so try to do all thyroid tests by 9am ideally

Felly35
Felly35 in reply to SlowDragon

Hi SlowDragon, I am fine with coconut milk as I use it with my milkshakes but cheese is the one which I can’t really replace with something else as I have tried dairy free ones and I wasn’t keen on them. But I do like goat cheese.

I do try my best in regards with the diet. I’ve tried Paleo diet for 3 months and I was really fine with it but I was concerned of eating too much meat x

SlowDragon
SlowDragonAdministrator in reply to Felly35

With Hashimoto's many of us need high protein, good fats and low carbs to do well

Felly35
Felly35 in reply to SlowDragon

I understand now why my body wants to eat protein. I was feeling guilty to cook meat dishes...

shaws
shawsAdministrator in reply to Felly35

If you want to 'reply' you have to press the reply button before your comment, otherwise the person isn't notified. I will add in SlowDragon just in case she hasn't seen your response.

Follow the instructions for a blood test, i.e. early a.m. etc. Also if you were taking replacement thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards.

These procedures give us the best result and stops doctors adjusting dose willy-nilly just to keep the TSH in range - we don't want 'in range' we want optimal and that is a TSH of 1 or lower. Unfortunately the medical personnel are very poorly trained in the importance of hormones. Especially ones which run our whole metabolism.

You may find that if you are able to resolve your symptoms maybe that your doctor will learn a thing or two. There is not always a guarantee that a private or holistic doctor will resolve your deficency. However, if you wish to have a private consultation email Dionne at Thyroiduk who has a list of sympathetic doctors. Email below:-

tukadmin@thyroiduk.org

Felly35
Felly35 in reply to shaws

Hi Shaws, thank you for the advice. I’ve never been on any replacement thyroid hormones. I will try to get my blood test as soon as I can and post the new results and take it from there.

It’s so annoying that doctors don’t understand as we are struggling so much with our daily life :(

shaws
shawsAdministrator in reply to Felly35

I doubt 'women's problems' are at the top of their knowledge of 'optimum medications'.

If your doctor or lab wont do all - they seem to do the standard TSH and T4 and that's insufficient we have three private labs that will do so and they are home pin-prick tests so make sure you are well-hydrated a couple of days before blood draw and arms/hands are warm. Test has to be fasting (you can drink water) and if on thyroid hormone replacement allow a gap of 24hours between last dose and test.

Ideally you need:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. GP should also test Vit B12, Vit D, iron, ferritin and folate.

Felly35
Felly35 in reply to shaws

Thank you Shaws

Good morning felly35 I was in the position as you I smoked for a number of years gave it up and got hypothyroidism, I was tired all the time, sever constipation, mood swings, not wanting to go out, massive weight gain, hair and eye brows disappearing, pain in my joints muscle spasms and my gp told me I had an infection and left me walking around undiagnosed. I then saw another gp in my surgery who put me on levothyroxin witch did not make me feel any better my pills have gone up and down. I myself do not feel any change but I have moved gp so it all starts again . I don’t have an endocrinologist so I can relate to that part but I can tell you it takes a while and I would surgest you get a T3 blood test done then talk to your gp or move doctors like myself and hope you find one the noes what they are doing sorry I can not help any more but hope this helps good luck on you journey 🙂

Felly35
Felly35 in reply to Icecold

Hi Icecold, thank you so much for your reply. It helps me to know that I’m not the only one because I’ve always ask myself ‘why me?’ But there are so many people with this condition and doctors don’t listen to us and it’s so frustrating. I’m hoping that one day something will be done so we can have a normal life again. Thanks a lot for sharing your story. I will come back with my new blood test results as soon as I will have them. All the best to you as well x

Hi Felly35, I'm sorry you're going through this - I can completely empathise with you as I'm having similar difficulties.

Your TSH might be in range but your FT4 is way too low and your T3 also low. And the TPOAb indicate Hashimotos. I'm new to all this myself but look up Izabella Went Thyroid Pharmacist - I've watched some of her videos on Youtube and ordered both her books. I'm so glad I came across her. I haven't managed to read the books yet but the info in her videos is extremely eye opening and helpful.

I know that giving up foods and things can be so difficult (trust me I know!). If you have gut issues I would definitely give up dairy all together and avoid soy at all costs as this is an endocrine disruptor. I haven't had dairy for a long time, goatscheese, dairy chocolate and bakery things were my go to but it's just not worth it for how bad they are and how they made me feel afterwards. I know what you mean about eating meat too as it doesn't sit well with me at all, I gave up meat last year due to health and moral reasons but then I felt worse and so I'm now following a Paleo diet and if that isn't enough then I'll do AIP.

Sending warm wishes your way x

Hi Flossles, thank you so much for your reply.

This is exactly what I have tried to follow. I have watch Izabella Wentz video and bought the books which I haven’t finished reading due to feeling tired most of the time. I have Paleo and AIP books but very hard to be on diet. As I am the only one cooking in our family it is always to much for me. The most annoying thing with this disease is being tired :( can’t do things... I am gluten free and it wasn’t easy to start with it and I am sure giving up on dairy is possible too.

Thank you for your advice. It is encouraging me to try more and not give up. I am so glad that finally I’ve posted my blood test and ask for help here as no one from friends and family would understand...

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