Help reading results

[HypoF3XXY]

Hello all,

I have my first and second set of results can someone say what I should add, I have been referred to an Endo now as I feel worse on Levo than I ever have off it. I do not have my hospital results which had my TSH at 118at the beginning of Jan.

My Jan doc results are :

TSH - 75.2 ( 0.25 - 5.0) Above

Free T4 - 6.1 ( 9.0 - 23.0 ) Below

Serum calcium 2.26 ( 2.2 - 2.6) Borderline

Serum adjusted calcium level 2.22 ( 2.2 - 2.6 ) Borderline

Haematocrit 0.35 ( 0.37 - 0.47) Below

5weeks on levo at 50mgs, but feel worse on meds than I did off them,

Feb 28 bloods

TSH - 28.3 ( 0.25 - 5.0) above but much better

Free T4 - 12.3 (9.0 - 23.0)

Free T3 - 4.4 ( 3.5 - 6.5)

Vit B12 178 ( 197.0 - 771.0) Below

Folate 7.4 ( < 3 is suggestive of deficiency)

Ferritin 18 ( 13 - 150 )

Hematocrit 0.37 ( 0.37 - 0.47 )

Thank you in advance

[shaws]

You have my wholehearted sympathy as I was the same. High TSH and was far worse on levo than before being diagnosed. We seem to develop far more symptoms and we don't have an idea what's going on.

However, the first thing to get tested is your B12, which is below range. Low B12 or Vit D have to be treated but for B12 your doctor has to find out if you have Pernicious Anaemia another severe autoimmune disease and do not take supplements until you have had proper diagnosis.

Your dose is a starting dose, 50mcg and you will have an increase of 25mcg every six weeks until your symptoms go. Not until the TSH has reached a level.

We have to read and learn in order that we know more than most doctors.

First - all blood tests for thyroid hormones have to be the very earliest possible, fasting (you can drink water) and allow 24 hours gap between your last dose of levo and the test and take afterwards. This allows the TSH to be at its highest as that seems to be all doctors look at and it reduces throughout the 24 hours of the day.

Always get a print-out from the surgery with the ranges for your own records and you can post if you have a query.

Levothyroxine takes about six weeks to build up in your system, so it is slow and steady with 25mcg increases.

I know how awful you feel as do the other members. Once your dose reaches an optimum (that means you have no clinical symptoms and feel well) you should be able to lead a normal life as thousands do fine on levo.

First priority is to get your B12 level sorted. Do not take any supplements yet. As stated above GP should do an investigation on the intrinsic factor which test confirms pernicious anaemia or not. If you do have PA, there is another HU site and they will be able to assist you on getting the best way forward with PA.

It's not unusual to have more than one autoimmune condition.

[HypoF3XXY in reply to shaws]

I am not really understanding the conversion side of the Free T4 to T3 are mine at the right end of the ranges ?. I have a good doctor but even under her own admission has to phone endos at the local hospital to discuss how to progress with me. As I said the other day I am now on 75mgs Levo , blood test to be done at the end of the month. I appreciate the time you taken to answer my questions, I never expected to have something found to be wrong and then to be made worse, doc said today that she thinks my body has been working in such an unsatisfactory way that now things are changing my body is in shock and is going haywire and that is why after feeling OK , I am now getting every symptom of Hypothyroidism going.

[greygoose in reply to HypoF3XXY]

We often get worse before we get better.

It's very early days, yet. Your TSH is still way too high, so not surprising you're feeling bad. I wouldn't worry about conversion at this point, if I were you. It looks fine, but you just don't have enough to convert. 75 mcg levo is little more than a starter dose. You are going to need several more increases before you get to your optimal dose.

In the mean-time, you really must do something about those nutrients - or your doctor should. She should be giving you B12 injections, and testing Intrinsic Factor (antibody) to see if you have Pernicious Anemia. If i were you, I would take your B12/Folate results over to the Pernicious Anemia forum on HU, and ask their advice :

healthunlocked.com/pasoc/po...

She also needs to investigate your low ferritin, do a lot more tests for anemia. It's hardly surprising you feel bad with such low nutrients. She should also test your vit D, because that is probably low, too! She probably doesn't understand how important these things are, because they don't 'do' nutrition in med school! Up to you to point it out to her.

[SeasideSusie Remembering in reply to HypoF3XXY]

HypoF3XXY

"I am not really understanding the conversion side of the Free T4 to T3 are mine at the right end of the ranges ?"

A simple explanation is that T4 is a storage hormone/pro hormone which has to convert to T3 which is the active hormone that every cell in our bodies need.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges. So at the moment your results aren't in the right place but they're improving and going the right way. Further increases in Levo should eventually get your results to where they should be and your symptoms should abate.

As mentioned, it is vital that your low nutrients are addressed. Thyroid hormone can't work properly unless all your levels are optimal, not just in range. So when you have treatment prescribed, it would be a good idea to run it past members because frequently doctors don't prescribe enough.

We all need to read and learn because many doctors (and endos) know very little about how to treat Hypothyroidism and will only dose by numbers rather than how you feel. A good place to start is ThyroidUK's main website and work your way through the menu, then ask questions here.

thyroiduk.org.uk/tuk/index....

Start at 'About the Thyroid' in the purple menu then work your way down.

[shaws in reply to HypoF3XXY]

We don't really need to know much about blood tests. The priority is on how the patient is 'feeling'.

Doctors are not trained particularly well either as they appear to have been told, "get the TSH anywhere in the range and stop prescribing as the aim is a TSH within the range".

Levothyroxine is the hormone T4 and is inactive and it has to convert to T3. T3 is the Active hormone required in all of our receptor cells and it is T3 which will relieve our clinical symptoms when we are on an optimum dose for us personally. Some need high doses of T4 (levo) to do so. Others need a lesser amount. Some cannot get better on T4 only, so the addition of some T3 is often helpful.

Your body isn't going haywire. Our thyroid hormones have been gradually diminishing until we are finally diagnosed and it could have taken years. Thyroid hormones drive our whole metabolism and your TSH has to come down to around 1, so you have quite a bit to go yet. We have to be patient as it does come as a shock that when finally diagnosed and given replacement hormones that we feel much worse.

So, as we have to add levo gradually, it can take quite a few months to feel well.

Also sometimes the fillers/binders in the levothyroxine can cause symptoms too.

There are several generic levothyroxines available. There was one Brand named Eltroxin but it was withdrawn, probably because the manufacturer could make more money with the generic levo.

[HypoF3XXY]

I am a life long vegetarian so that could have something to do with low Iron , I have taken a supplement on and off ( off for the past year or so ). I have messaged the other board, thank you for your advise.

[HypoF3XXY]

I pulled out some old hospital bloods - June 2016 , my Vit D3 was 65.9 and my Vit D2 was <5 no reference ranges given, they did a Parathyroid back then - 5.94 ( 1.48 - 7.63)