Tired of being tired- my hypothyroidism story - Thyroid UK

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Tired of being tired- my hypothyroidism story

Ujna
Ujna

Hello everyone

I was diagnosed with iron deficiency anemia and hypothyroidism on July 2017.

July 2017

Serum ferritin 6.8 (13-150)

Serum free t4 11.9 (12-22)

Serum tsh 4.95 (0.27-4.2)

I was given iron infusions to treat anemia. I was told that my thyroid is borderline so I don't need treatment for that. After iron infusion I got worst than ever before, severe fatigue, foggy head, short of breath, muscle weakness, light headed. I was housebound. At the end of August, GP put me on 25mcg of levothyroxine and blood test done after 2 months.

October 2017

Free t4 14.7

TSH 2.41

Antibodies : Negative (Don't know what test GP did, TPo I think)

Serum vit b12 551 (197-771)

Serum folate 18.5 (3.9-26.8)

Serum ferritin 64.1 (13-150)

ESR 12 (1-12)

I was told everything is normal. I should carry on with 25mcg Levo. But I wasn't feeling any better. I was sent back home twice saying you are fine. On Feb, finally one doctor agreed to do my blood test.

Feb 2018

Free t4 15.5

Tsh 3.85

Vit d 29

Levo increased to 50 mcg and vit d3 4000 units daily for 10 weeks.

April end 2018

Free t4 14

Tsh (forgot to ask)

Vit d 88 (normal so no more needed)

Wasn't feeling any better so levo increased to 100mcg. After increment, I have knee pain/weakness after simple exercise or short walk, short of breath, weakness...

Am I overmedicated? Does 50mcg increment at once hard to handle by our body?

My t3 is never tested

Doctors & receptionists at GP get furious if asked about the blood test level or print outs of blood results.

8 Replies
oldestnewest

Hi Ujna. I'm sorry you're not feeling well. It's very difficult to determine what is going on here without recent and complete and detailed blood results. Did your doctor re test your complete iron panel levels since the iron infusion? Are you supplementing iron? It's possible your levels are toxic, and iron toxicity has similar symptoms as iron deficiency.

Well, your thyroid tests are incomplete. You have two thyroid hormones that work together, not just one. They are called T3 and T4. BOTH levels need to be tested each time together, otherwise there is no way to determine your status. The tests that you need tested together each time are called TSH, FT3 and FT4.

You need to include the lab ranges of your thyroid tests, just as you've included the lab ranges with your other tests. Otherwise those are just numbers and it can't determined if your levels are high or low. Can you add the lab ranges to your results? Even without the lab ranges, your TSH is too high for someone who is supposed to be properly medicated. When it's too high, thyroid hormones are too low. Too high TSH indicates too slow of a thyroid, or hypothyroid.

Another thing, the correct starting dose is 50 mcg levo, not 25 mcg. So you were under medicated. YES! Increasing T4 medication by 50 mcg in one increment is much too much! It's usually increased either 12.5 mcg or 25 mcg. Until your thyroid hormone levels are where they should be and you have little or not symptoms, complete thyroid tests are done every 6 weeks. After each medication increase, complete thyroid labs (TSH, FT3 and FT4) are tested at 6 weeks. This is to determine effectiveness of treatment, hormone levels, and if you need to add T4 or T3 medication. You'll have to wait until the 6 week point to retest, and you need to test your FT3.

Your ESR is too high. This is an inflammatory marker. This might be caused by high thyroid antibodies, or by something else. Did your doctor test your thyroid antibodies, TPOab and TGab, to make sure that Hashimoto's is not the cause of your thyroid disease and inflammation? If not, this needs to be done so you can treat it correctly.

Your T3 needs to be tested. The test is FT3, and it needs to be tested with TSH and FT4.

Well, that's too bad that they don't like you following your patient rights and requesting copies of your tests, but that is their problem. It is one of your many patient rights for you to have copies of all of your tests. You can always remind them of that. They cannot legally deny you your copies. There is probably a law as to the maximum amount of time they can take to release your diagnostic results to you, too. If they get too snotty about it or if they exceed the allowed time frame, you can always file a complaint.

Ujna
Ujna in reply to ShootingStars

Thank you shootingstars for your detailed explanations....you're truly a star. My latest iron level after infusions was tested on Oct 2017

Serum ferritin 64.1 (13-150)

Haemoglobin 129 (120-150)

After that no any test done for iron and no supplements taken after iron infusions.

GP said my ESR are normal so no action needed.

Ranges for

Serum tsh 0.27-4.2

Serum t4 12-22

GP said they don't test t3 so I'm thinking to get it done privately along with thyroid antibodies. How's Medichecks?

My thyroid antibodies (TPO I guess) was tested by GP on October 2017, which they said was negative so it's not hashimoto.

Tomorrow I've appointment with the GP as I'm feeling worst, can you pls suggest me what blood test to ask for?

SlowDragon
SlowDragonAdministrator in reply to Ujna

How long have you been on 100mcg?

You will need retesting after 6-8 weeks on constant dose

Do you have enough Levo to continue at that dose?

Really dose should only be increased in 25mcg steps. If not been long on 100mcg this may be better option.

Ask GP for increased prescription either for 100mcg (unlikely to agree) or 75mcg (ask for this as a "trial" if they are reluctant)

For full Thyroid evaluation after 6-8 weeks on constant dose you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus testing of vitamin D, folate, ferritin and B12. These could be done mow

You are unlikely to get both TPO and TG antibodies tested on NHS. If TPO is negative they won't test TG antibodies. And rarely will they test FT3

Ask for ferritin to be retested and you don't seem to have had B12 or folate tested, so ask for them too

Vitamin D, you will need to self supplement now. NHS won't prescribe for ongoing necessary maintenance dose. Trial and error what each person needs. Aiming to keep level up around 100nmol

You might need 1000iu or 2000iu daily, or more. Until you know, Ideally need to be testing twice yearly via vitamindtest.org.uk £29'

Also important to supplement magnesium and vitamin K2 Mk7 when on vitamin D

articles.mercola.com/sites/...

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test both thyroid antibodies, FT3 and FT4, plus vitamins

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

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

You are legally entitled to printed copies of your previous blood test results. You don't need to explain why you want them. Ask GP to give you a copy while with him

All UK GP practices are supposed to offer online access for blood test results. Ring and ask receptionist if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018)

ShootingStars
ShootingStars in reply to Ujna

Hi Ujuna. You are very welcome! First off, if you have symptoms, you are not fine! Symptoms always have a cause. My goodness! What do these doctors think their jobs are? Just to judge people, don't get to the bottom of the cause of the symptoms, and not to ever treat patients correctly? It really seems like this is the trend.

Did they not run a complete iron panel after iron infusions? Do you eat foods containing iron? Do you have heavy periods? If no supplements and not eating iron foods, your iron will quickly go down. You need to retest your ferritin, and preferably get a complete iron panel.

The thing about your Vitamin D, what is the lab range? What does normal, don't need to take more mean? If stop taking D, your D goes back down. If you're in the UK, I'm guessing the lab range 150? If so, your D is too low and could be contributing to symptoms. I hope you are continuing to take daily 4000iu? If you don't take it daily, your level will quickly go back down, plus, it does not look high enough at 88.

You are very under medicated. Your FT4 is much too low at 14 (12-22). It's barely in range. No wonder you are feeling so poorly! FT4 should be at least 50% of range, but not much over 75% of range. Your FT4 should be at least 15, and not much higher than 19.2.

That GP is confused. You have two thyroid hormones, not one. You also have two thyroid antibodies, not one. The two antibodies that have to be tested are called TPOab and TGab. What are you exact TPO results and the range? I don't know about Medichecks, but lots of people in the UK seem to use that company and many have posted their results here. If your GP is not running the correct tests, then yes, you need to go get your own correct testing done.

You are under medicated as per your previous labs, but are now on 100 mcg levo since which date? Your symptoms sound like probably low FT3 and very possibly Hashimoto's. Maybe you can convince your GP to run a COMPLETE thyroid panel, TSH, FT3 and FT4? And also test your TGab. If not, quickly get the Medichecks test, get the results and don't be surprised if it shows low FT3 and possibly high TGab. Then you can get T3 medication from an outside source. Your iron and D should be tested again. Have you tested B12 and folate? If not, ask for these.

ShootingStars
ShootingStars in reply to Ujna

OH! The other thing we must ask is how are you taking your levo? What time of day, with or without food, with or without coffee or tea, and how soon do you eat following taking levo? Are you taking any calcium supplements? If so, what time do you take these?

Thank you SlowDragon & shootingstars...

Oct 2017

Vit b12 551 (197-771)

Folate 18.5 (3.9-26.8)

Yes I'm in London, UK. I'm on 100mcg levo for nearly 3 weeks now. I'm not on any supplements right now. After my vit d3 level reached 88, GP said I don't need more. As suggested by you both I'll start taking maintenance dose of vit d3 from tomorrow.

I take levo first thing in the morning at around 7am daily and eat breakfast around 9 am. I'm really having hard times with 2 kids under 5 and my poor health.

Thank you both for your suggestions

SlowDragon
SlowDragonAdministrator in reply to Ujna

Then as you have been on 100mcg for three weeks, push GP to allow you to stay on this dose and get tested at 6-8 weeks, including FT3

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine (it's not correct that test is done 4 weeks after dose increase. 6-8 weeks minimum)

cks.nice.org.uk/hypothyroid...

Make sure to get test done as early as possible in morning and fasting (this pushes TSH as high as possible) delay taking morning Levo until after blood test. This gives lowest FT4

Essential to test FT3 and both antibodies.

Folate and B12 tests are quite old, it might be good idea to get retested. See if GP will do so

Ujna
Ujna in reply to SlowDragon

Will do as per your suggestions... thanks SlowDragon😊

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